Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 , you sound like an amazing mom!! Both your daughters are lucky to have you! Dixie Grandmom to Bleu, 2, wcf cfparents writes: >I am one of the first to admit that I hate CF and there are definitely >things that I have lost because of CF. We are living our lives totally >differently now than we were 2 years ago in July when life was carefree >and the future limitlessly. The excitement of having our second kid, the >joy of having two sisters for each other. It lasted two weeks until they >told us about her newborn tests and the fact that one highly indicated CF >so they ran a DNA test and she was double delta F08 positive. > >I have learned some things since that time that I didn't know I had or >didn't realize I was capable of. I find in general, I have become much >more calmer. Yeah, things still get me down but I really try and just >deal with each day, each moment and I don't think real far ahead. I hate >the vomiting but I don't let it stress me out. My husband and I have had >a few spats here and there over his inadequate care of Emma. He's very >forgetful and frankly I feel like I have to be around and make sure he >gives her meds, feeds her on time, etc. I really do the majority of her >care but he is good with alternating nights of therapy (this lets us each >spend some one on one time with our older daughter as well). I find >myself to be a generally strong person. I've been there for every night >she has spent in the hospital (2 trips so far), every procedure, every >test, etc. I have missed very little. I don't break down or get >stressed out during any of it. I did the first year when she refused to >eat but that was pure frustration and anxiety because I didn't know what >to do. She had a trip to the ER a few weeks ago for not keeping anything >down (meds included) and I forgot toys. The three of us, my two girls >and I spent the time singing. Luckily we were in our own room where no >one could hear us. I find I have an inner strength that I never realized >I had. I get very little support from friends and family, you guys are >really it for me. It's hard for other people to understand what life is >like at our house. I am one of six kids but only two of them seem to get >how hard this is and both of them are busy with their own lives. My one >brother informed me that his son vomits as well. (yeah, that's great but >I am sure it's not quite the same experience). This week, I called and >told a friend that Emma wouldn't be going to a party my friend is having >because she has a cold and it conflicts with her feeding schedule (lately >she vomits whenever we are out so I avoid this). My friends response >(before I even had a chance to mention that this meant we had to do >therapy in the afternoon) was, " Oh, just feed her at a different time and >no one cares if their kids are around her when she has a cold " . I hated >to go into a big long discussion on how Emma has scheduled meal times >because if she eats any sooner it increases the likelihood to vomit, etc. > She didn't want to hear it. Family and friends just grasp all that we >do to keep their weight up and their breathing clear. > >We have gone out twice since Emma was born without the girls. Once was >for about an hour or two for dinner and the other time was for a CF >seminar at CHOP. My husband and I have developed certain routines that >we do each night and morning in order to get ready for bed or for the >day. Things are organized (although not entirely efficient) and it makes >things more manageable. I still go to bed every night feeling I have >half a billion things still undone but that's the way life is. >Basically, I am just surprised at how well both of us are dealing with >this. I feel like for now, we will survive as a family. Things will >definately get harder. Emma has had mainly digestive problems but I am >sure someday she will develop more serious lung issues. We will have to >deal with PICC lines, IVs, etc but until then I am just worrying about >what I have to do today and how I can enjoy time with both my girls. > >What have I gained? The knowledge that I am a strong, calm person and a >mother willing to do anything I can to help my kids and that our family >will survive. I try not to worry about what I don't have or what I have >lost. I will take whatever time I can get with Emma. She is a simply >amazing and beautiful kid. > >Just my take on the what have I lost conversation. > > - mom to Emma 2 years w/cf and reflux and Isabelle 4 years wo/cf >and who went three weeks without peeing in her pants and then just >suddenly did it again yesterday (agghhhh) > > >________________________________________________________________ > >GET INTERNET ACCESS FROM JUNO! > >Juno offers FREE or PREMIUM Internet access for less! > >Join Juno today! For your FREE software, visit: > >http://dl.www.juno.com/get/web/. > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR >TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 , you sound like an amazing mom!! Both your daughters are lucky to have you! Dixie Grandmom to Bleu, 2, wcf cfparents writes: >I am one of the first to admit that I hate CF and there are definitely >things that I have lost because of CF. We are living our lives totally >differently now than we were 2 years ago in July when life was carefree >and the future limitlessly. The excitement of having our second kid, the >joy of having two sisters for each other. It lasted two weeks until they >told us about her newborn tests and the fact that one highly indicated CF >so they ran a DNA test and she was double delta F08 positive. > >I have learned some things since that time that I didn't know I had or >didn't realize I was capable of. I find in general, I have become much >more calmer. Yeah, things still get me down but I really try and just >deal with each day, each moment and I don't think real far ahead. I hate >the vomiting but I don't let it stress me out. My husband and I have had >a few spats here and there over his inadequate care of Emma. He's very >forgetful and frankly I feel like I have to be around and make sure he >gives her meds, feeds her on time, etc. I really do the majority of her >care but he is good with alternating nights of therapy (this lets us each >spend some one on one time with our older daughter as well). I find >myself to be a generally strong person. I've been there for every night >she has spent in the hospital (2 trips so far), every procedure, every >test, etc. I have missed very little. I don't break down or get >stressed out during any of it. I did the first year when she refused to >eat but that was pure frustration and anxiety because I didn't know what >to do. She had a trip to the ER a few weeks ago for not keeping anything >down (meds included) and I forgot toys. The three of us, my two girls >and I spent the time singing. Luckily we were in our own room where no >one could hear us. I find I have an inner strength that I never realized >I had. I get very little support from friends and family, you guys are >really it for me. It's hard for other people to understand what life is >like at our house. I am one of six kids but only two of them seem to get >how hard this is and both of them are busy with their own lives. My one >brother informed me that his son vomits as well. (yeah, that's great but >I am sure it's not quite the same experience). This week, I called and >told a friend that Emma wouldn't be going to a party my friend is having >because she has a cold and it conflicts with her feeding schedule (lately >she vomits whenever we are out so I avoid this). My friends response >(before I even had a chance to mention that this meant we had to do >therapy in the afternoon) was, " Oh, just feed her at a different time and >no one cares if their kids are around her when she has a cold " . I hated >to go into a big long discussion on how Emma has scheduled meal times >because if she eats any sooner it increases the likelihood to vomit, etc. > She didn't want to hear it. Family and friends just grasp all that we >do to keep their weight up and their breathing clear. > >We have gone out twice since Emma was born without the girls. Once was >for about an hour or two for dinner and the other time was for a CF >seminar at CHOP. My husband and I have developed certain routines that >we do each night and morning in order to get ready for bed or for the >day. Things are organized (although not entirely efficient) and it makes >things more manageable. I still go to bed every night feeling I have >half a billion things still undone but that's the way life is. >Basically, I am just surprised at how well both of us are dealing with >this. I feel like for now, we will survive as a family. Things will >definately get harder. Emma has had mainly digestive problems but I am >sure someday she will develop more serious lung issues. We will have to >deal with PICC lines, IVs, etc but until then I am just worrying about >what I have to do today and how I can enjoy time with both my girls. > >What have I gained? The knowledge that I am a strong, calm person and a >mother willing to do anything I can to help my kids and that our family >will survive. I try not to worry about what I don't have or what I have >lost. I will take whatever time I can get with Emma. She is a simply >amazing and beautiful kid. > >Just my take on the what have I lost conversation. > > - mom to Emma 2 years w/cf and reflux and Isabelle 4 years wo/cf >and who went three weeks without peeing in her pants and then just >suddenly did it again yesterday (agghhhh) > > >________________________________________________________________ > >GET INTERNET ACCESS FROM JUNO! > >Juno offers FREE or PREMIUM Internet access for less! > >Join Juno today! For your FREE software, visit: > >http://dl.www.juno.com/get/web/. > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR >TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 , you sound like an amazing mom!! Both your daughters are lucky to have you! Dixie Grandmom to Bleu, 2, wcf cfparents writes: >I am one of the first to admit that I hate CF and there are definitely >things that I have lost because of CF. We are living our lives totally >differently now than we were 2 years ago in July when life was carefree >and the future limitlessly. The excitement of having our second kid, the >joy of having two sisters for each other. It lasted two weeks until they >told us about her newborn tests and the fact that one highly indicated CF >so they ran a DNA test and she was double delta F08 positive. > >I have learned some things since that time that I didn't know I had or >didn't realize I was capable of. I find in general, I have become much >more calmer. Yeah, things still get me down but I really try and just >deal with each day, each moment and I don't think real far ahead. I hate >the vomiting but I don't let it stress me out. My husband and I have had >a few spats here and there over his inadequate care of Emma. He's very >forgetful and frankly I feel like I have to be around and make sure he >gives her meds, feeds her on time, etc. I really do the majority of her >care but he is good with alternating nights of therapy (this lets us each >spend some one on one time with our older daughter as well). I find >myself to be a generally strong person. I've been there for every night >she has spent in the hospital (2 trips so far), every procedure, every >test, etc. I have missed very little. I don't break down or get >stressed out during any of it. I did the first year when she refused to >eat but that was pure frustration and anxiety because I didn't know what >to do. She had a trip to the ER a few weeks ago for not keeping anything >down (meds included) and I forgot toys. The three of us, my two girls >and I spent the time singing. Luckily we were in our own room where no >one could hear us. I find I have an inner strength that I never realized >I had. I get very little support from friends and family, you guys are >really it for me. It's hard for other people to understand what life is >like at our house. I am one of six kids but only two of them seem to get >how hard this is and both of them are busy with their own lives. My one >brother informed me that his son vomits as well. (yeah, that's great but >I am sure it's not quite the same experience). This week, I called and >told a friend that Emma wouldn't be going to a party my friend is having >because she has a cold and it conflicts with her feeding schedule (lately >she vomits whenever we are out so I avoid this). My friends response >(before I even had a chance to mention that this meant we had to do >therapy in the afternoon) was, " Oh, just feed her at a different time and >no one cares if their kids are around her when she has a cold " . I hated >to go into a big long discussion on how Emma has scheduled meal times >because if she eats any sooner it increases the likelihood to vomit, etc. > She didn't want to hear it. Family and friends just grasp all that we >do to keep their weight up and their breathing clear. > >We have gone out twice since Emma was born without the girls. Once was >for about an hour or two for dinner and the other time was for a CF >seminar at CHOP. My husband and I have developed certain routines that >we do each night and morning in order to get ready for bed or for the >day. Things are organized (although not entirely efficient) and it makes >things more manageable. I still go to bed every night feeling I have >half a billion things still undone but that's the way life is. >Basically, I am just surprised at how well both of us are dealing with >this. I feel like for now, we will survive as a family. Things will >definately get harder. Emma has had mainly digestive problems but I am >sure someday she will develop more serious lung issues. We will have to >deal with PICC lines, IVs, etc but until then I am just worrying about >what I have to do today and how I can enjoy time with both my girls. > >What have I gained? The knowledge that I am a strong, calm person and a >mother willing to do anything I can to help my kids and that our family >will survive. I try not to worry about what I don't have or what I have >lost. I will take whatever time I can get with Emma. She is a simply >amazing and beautiful kid. > >Just my take on the what have I lost conversation. > > - mom to Emma 2 years w/cf and reflux and Isabelle 4 years wo/cf >and who went three weeks without peeing in her pants and then just >suddenly did it again yesterday (agghhhh) > > >________________________________________________________________ > >GET INTERNET ACCESS FROM JUNO! > >Juno offers FREE or PREMIUM Internet access for less! > >Join Juno today! For your FREE software, visit: > >http://dl.www.juno.com/get/web/. > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR >TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2002 Report Share Posted October 6, 2002 In a message dated 10/4/2002 9:39:06 AM Central Daylight Time, maria_law@... writes: > I am one of the first to admit that I hate CF and there are definitely > things that I have lost because of CF. We are living our lives totally > differently now than we were 2 years ago in July when life was carefree > and the future limitlessly. The excitement of having our second kid, the > joy of having two sisters for each other. It lasted two weeks until they > told us about her newborn tests and the fact that one highly indicated CF > so they ran a DNA test and she was double delta F08 positive. > > I have learned some things since that time that I didn't know I had or > didn't realize I was capable of. I find in general, I have become much > more calmer. Yeah, things still get me down but I really try and just > deal with each day, each moment and I don't think real far ahead. I hate > the vomiting but I don't let it stress me out. My husband and I have had > a few spats here and there over his inadequate care of Emma. He's very > forgetful and frankly I feel like I have to be around and make sure he > gives her meds, feeds her on time, etc. I really do the majority of her > care but he is good with alternating nights of therapy (this lets us each > spend some one on one time with our older daughter as well). I find > myself to be a generally strong person. I've been there for every night > she has spent in the hospital (2 trips so far), every procedure, every > test, etc. I have missed very little. I don't break down or get > stressed out during any of it. I did the first year when she refused to > eat but that was pure frustration and anxiety because I didn't know what > to do. She had a trip to the ER a few weeks ago for not keeping anything > down (meds included) and I forgot toys. The three of us, my two girls > and I spent the time singing. Luckily we were in our own room where no > one could hear us. I find I have an inner strength that I never realized > I had. I get very little support from friends and family, you guys are > really it for me. It's hard for other people to understand what life is > like at our house. I am one of six kids but only two of them seem to get > how hard this is and both of them are busy with their own lives. My one > brother informed me that his son vomits as well. (yeah, that's great but > I am sure it's not quite the same experience). This week, I called and > told a friend that Emma wouldn't be going to a party my friend is having > because she has a cold and it conflicts with her feeding schedule (lately > she vomits whenever we are out so I avoid this). My friends response > (before I even had a chance to mention that this meant we had to do > therapy in the afternoon) was, " Oh, just feed her at a different time and > no one cares if their kids are around her when she has a cold " . I hated > to go into a big long discussion on how Emma has scheduled meal times > because if she eats any sooner it increases the likelihood to vomit, etc. > She didn't want to hear it. Family and friends just grasp all that we > do to keep their weight up and their breathing clear. > > We have gone out twice since Emma was born without the girls. Once was > for about an hour or two for dinner and the other time was for a CF > seminar at CHOP. My husband and I have developed certain routines that > we do each night and morning in order to get ready for bed or for the > day. Things are organized (although not entirely efficient) and it makes > things more manageable. I still go to bed every night feeling I have > half a billion things still undone but that's the way life is. > Basically, I am just surprised at how well both of us are dealing with > this. I feel like for now, we will survive as a family. Things will > definately get harder. Emma has had mainly digestive problems but I am > sure someday she will develop more serious lung issues. We will have to > deal with PICC lines, IVs, etc but until then I am just worrying about > what I have to do today and how I can enjoy time with both my girls. > > What have I gained? The knowledge that I am a strong, calm person and a > mother willing to do anything I can to help my kids and that our family > will survive. I try not to worry about what I don't have or what I have > lost. I will take whatever time I can get with Emma. She is a simply > amazing and beautiful kid. > > Just my take on the what have I lost conversation. > > - You write so beautifully! It is exactly how I feel. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2002 Report Share Posted October 6, 2002 In a message dated 10/4/2002 9:39:06 AM Central Daylight Time, maria_law@... writes: > I am one of the first to admit that I hate CF and there are definitely > things that I have lost because of CF. We are living our lives totally > differently now than we were 2 years ago in July when life was carefree > and the future limitlessly. The excitement of having our second kid, the > joy of having two sisters for each other. It lasted two weeks until they > told us about her newborn tests and the fact that one highly indicated CF > so they ran a DNA test and she was double delta F08 positive. > > I have learned some things since that time that I didn't know I had or > didn't realize I was capable of. I find in general, I have become much > more calmer. Yeah, things still get me down but I really try and just > deal with each day, each moment and I don't think real far ahead. I hate > the vomiting but I don't let it stress me out. My husband and I have had > a few spats here and there over his inadequate care of Emma. He's very > forgetful and frankly I feel like I have to be around and make sure he > gives her meds, feeds her on time, etc. I really do the majority of her > care but he is good with alternating nights of therapy (this lets us each > spend some one on one time with our older daughter as well). I find > myself to be a generally strong person. I've been there for every night > she has spent in the hospital (2 trips so far), every procedure, every > test, etc. I have missed very little. I don't break down or get > stressed out during any of it. I did the first year when she refused to > eat but that was pure frustration and anxiety because I didn't know what > to do. She had a trip to the ER a few weeks ago for not keeping anything > down (meds included) and I forgot toys. The three of us, my two girls > and I spent the time singing. Luckily we were in our own room where no > one could hear us. I find I have an inner strength that I never realized > I had. I get very little support from friends and family, you guys are > really it for me. It's hard for other people to understand what life is > like at our house. I am one of six kids but only two of them seem to get > how hard this is and both of them are busy with their own lives. My one > brother informed me that his son vomits as well. (yeah, that's great but > I am sure it's not quite the same experience). This week, I called and > told a friend that Emma wouldn't be going to a party my friend is having > because she has a cold and it conflicts with her feeding schedule (lately > she vomits whenever we are out so I avoid this). My friends response > (before I even had a chance to mention that this meant we had to do > therapy in the afternoon) was, " Oh, just feed her at a different time and > no one cares if their kids are around her when she has a cold " . I hated > to go into a big long discussion on how Emma has scheduled meal times > because if she eats any sooner it increases the likelihood to vomit, etc. > She didn't want to hear it. Family and friends just grasp all that we > do to keep their weight up and their breathing clear. > > We have gone out twice since Emma was born without the girls. Once was > for about an hour or two for dinner and the other time was for a CF > seminar at CHOP. My husband and I have developed certain routines that > we do each night and morning in order to get ready for bed or for the > day. Things are organized (although not entirely efficient) and it makes > things more manageable. I still go to bed every night feeling I have > half a billion things still undone but that's the way life is. > Basically, I am just surprised at how well both of us are dealing with > this. I feel like for now, we will survive as a family. Things will > definately get harder. Emma has had mainly digestive problems but I am > sure someday she will develop more serious lung issues. We will have to > deal with PICC lines, IVs, etc but until then I am just worrying about > what I have to do today and how I can enjoy time with both my girls. > > What have I gained? The knowledge that I am a strong, calm person and a > mother willing to do anything I can to help my kids and that our family > will survive. I try not to worry about what I don't have or what I have > lost. I will take whatever time I can get with Emma. She is a simply > amazing and beautiful kid. > > Just my take on the what have I lost conversation. > > - You write so beautifully! It is exactly how I feel. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2002 Report Share Posted October 7, 2002 , What you wrote was great and I think it's wonderful you realize what a gift you have. So many never eally get it and they start whinning and so on. Ypu and your husband seem to be getting it together also. Good luck and God Bless. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2002 Report Share Posted October 7, 2002 , What you wrote was great and I think it's wonderful you realize what a gift you have. So many never eally get it and they start whinning and so on. Ypu and your husband seem to be getting it together also. Good luck and God Bless. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2002 Report Share Posted October 7, 2002 , What you wrote was great and I think it's wonderful you realize what a gift you have. So many never eally get it and they start whinning and so on. Ypu and your husband seem to be getting it together also. Good luck and God Bless. Debi Quote Link to comment Share on other sites More sharing options...
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