Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 our thoughts and prayers are with you and your family. rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 our thoughts and prayers are with you and your family. rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry to hear about and what your family is going through. I emailed you my phone number privately...please dont' hesitate to call me... deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry to hear about and what your family is going through. I emailed you my phone number privately...please dont' hesitate to call me... deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry to hear of your loss. I really can't offer any advice, sorry. I will, however, pray for you and your family to have strength to get through this. I'm sure is in a much better place now, without tubes or mito. Best wishes. Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry to hear of your loss. I really can't offer any advice, sorry. I will, however, pray for you and your family to have strength to get through this. I'm sure is in a much better place now, without tubes or mito. Best wishes. Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry for your loss. Know that we are all here for you. hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehele Please contact mito-owner with any problems or questions. Yahoo! Groups Sponsor ADVERTISEMENT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry for your loss. Know that we are all here for you. hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehele Please contact mito-owner with any problems or questions. Yahoo! Groups Sponsor ADVERTISEMENT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry to hear of 's passing. I am sure everything is mixed up in your head right now with tons of emotions. It is hard to watch our little ones suffer and not know what the best choices are. She is now in a place with no more sorrow and no more suffering and your mind can rest knowing she is being well taken care of. My heart breaks for you and I want to let you know that we are here for you if you wish to continue to participate with the group. There is also another group called Mitoangels that might be helpful to you. Please take care of yourself and keep in touch. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) lauren > > > hi everyone, i have sad news lauren died november 30th her > GI shut down (the g-tube and j-tube and by mouth wouldn't work) and > with her having many more bad days than good we made a very hard > decision and decided not to go with tpn lauren's quality of life > this past year had decreased and suffering increased too much. we > worked with childrens hospital's home care/hospice which i highly > recommend they helped us with numerous things, one of which was on > the last few days to keep lauren comfortable in closing i haven't > posted too much on this site, however, i visit it daily and it has > helped me tremenously-not only with learning things but also knowing > families that also have a unique medically fragile child. i welcome > any comments that might help my family thru this and i also welcome > contact from anyone that thinks i can maybe help them thank you > lisa ehele > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I am so sorry to hear of 's passing. I am sure everything is mixed up in your head right now with tons of emotions. It is hard to watch our little ones suffer and not know what the best choices are. She is now in a place with no more sorrow and no more suffering and your mind can rest knowing she is being well taken care of. My heart breaks for you and I want to let you know that we are here for you if you wish to continue to participate with the group. There is also another group called Mitoangels that might be helpful to you. Please take care of yourself and keep in touch. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) lauren > > > hi everyone, i have sad news lauren died november 30th her > GI shut down (the g-tube and j-tube and by mouth wouldn't work) and > with her having many more bad days than good we made a very hard > decision and decided not to go with tpn lauren's quality of life > this past year had decreased and suffering increased too much. we > worked with childrens hospital's home care/hospice which i highly > recommend they helped us with numerous things, one of which was on > the last few days to keep lauren comfortable in closing i haven't > posted too much on this site, however, i visit it daily and it has > helped me tremenously-not only with learning things but also knowing > families that also have a unique medically fragile child. i welcome > any comments that might help my family thru this and i also welcome > contact from anyone that thinks i can maybe help them thank you > lisa ehele > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 dear lisa, i am so so sorry. that is all i know to say. as i sit her and type, my heart is hurting for you and your family. i am crying. i cant tell you what to do or how to do it. i struggle every minute of the day. i miss my karlee beth so much. i am very sorry. please let me know how old lauren is? i will think of you. love, davonne atkins seymour, tn moma to karlee beth 11-14-02-8-10-04,kaitlin 8 and karson 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 dear lisa, i am so so sorry. that is all i know to say. as i sit her and type, my heart is hurting for you and your family. i am crying. i cant tell you what to do or how to do it. i struggle every minute of the day. i miss my karlee beth so much. i am very sorry. please let me know how old lauren is? i will think of you. love, davonne atkins seymour, tn moma to karlee beth 11-14-02-8-10-04,kaitlin 8 and karson 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 , I want to know you and your family are in my prayers in this very difficult time. My you remember all the happy times you had with and know that she is now in a healthy body without the pain of Mito. God be with you, Kathy, grandma to Audrey, 3 yearseheles wrote: hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehelePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 , I want to know you and your family are in my prayers in this very difficult time. My you remember all the happy times you had with and know that she is now in a healthy body without the pain of Mito. God be with you, Kathy, grandma to Audrey, 3 yearseheles wrote: hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehelePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 , Our thoughts and prayers are with you and your family. Hoping you find comfort and peace somehow. AnnMarie L. - Complex IV Married to my best friend Rick, Mom of (15), (12), Cassandra (6) and Joe (4 1/2) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, and a smile that never quits :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 , Our thoughts and prayers are with you and your family. Hoping you find comfort and peace somehow. AnnMarie L. - Complex IV Married to my best friend Rick, Mom of (15), (12), Cassandra (6) and Joe (4 1/2) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, and a smile that never quits :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hi, I just wanted to say that I am so very sorry for your loss. There probably isn't much to say that will ease your pain, just know that so many people in this group care for you and your family. Your little girl is now experiencing joy unimaginable to us here, and is free to run, play, jump, sing, and rejoice with no consequences. Collin mentions periodically that in Heaven he will no longer wear oxygen, his legs won't hurt and he will run all day. It's all I can do to not fall into a heap on the floor when he talks about that, but I know that Heaven is a beautiful place with no grief there. Sincerely, Joni > > hi everyone, i have sad news lauren died november 30th her > GI shut down (the g-tube and j-tube and by mouth wouldn't work) and > with her having many more bad days than good we made a very hard > decision and decided not to go with tpn lauren's quality of life > this past year had decreased and suffering increased too much. we > worked with childrens hospital's home care/hospice which i highly > recommend they helped us with numerous things, one of which was on > the last few days to keep lauren comfortable in closing i haven't > posted too much on this site, however, i visit it daily and it has > helped me tremenously-not only with learning things but also knowing > families that also have a unique medically fragile child. i welcome > any comments that might help my family thru this and i also welcome > contact from anyone that thinks i can maybe help them thank you > lisa ehele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hi, I just wanted to say that I am so very sorry for your loss. There probably isn't much to say that will ease your pain, just know that so many people in this group care for you and your family. Your little girl is now experiencing joy unimaginable to us here, and is free to run, play, jump, sing, and rejoice with no consequences. Collin mentions periodically that in Heaven he will no longer wear oxygen, his legs won't hurt and he will run all day. It's all I can do to not fall into a heap on the floor when he talks about that, but I know that Heaven is a beautiful place with no grief there. Sincerely, Joni > > hi everyone, i have sad news lauren died november 30th her > GI shut down (the g-tube and j-tube and by mouth wouldn't work) and > with her having many more bad days than good we made a very hard > decision and decided not to go with tpn lauren's quality of life > this past year had decreased and suffering increased too much. we > worked with childrens hospital's home care/hospice which i highly > recommend they helped us with numerous things, one of which was on > the last few days to keep lauren comfortable in closing i haven't > posted too much on this site, however, i visit it daily and it has > helped me tremenously-not only with learning things but also knowing > families that also have a unique medically fragile child. i welcome > any comments that might help my family thru this and i also welcome > contact from anyone that thinks i can maybe help them thank you > lisa ehele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Dear and family: I am so saddened to hear of 's passing. My heart goes out to your whole family. I cannot imagine what you have all faced! I am so sad for your grief. Just sending support and caring for your whole family. Cindy Cruz (mom to two boys with mito, Seth and Ben) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Dear and family: I am so saddened to hear of 's passing. My heart goes out to your whole family. I cannot imagine what you have all faced! I am so sad for your grief. Just sending support and caring for your whole family. Cindy Cruz (mom to two boys with mito, Seth and Ben) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Dear , I am so sorry and send my condolencesfor the loss of your precious child. It is the hardest thing in the world to watch our children suffer. She is no longer suffering with mito. I pray that you find comfort and peace in this most difficult time in your life. May her grace shine and her memory live forever. Blessings and prayers,   Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 lauren hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehele Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Dear , I am so sorry and send my condolencesfor the loss of your precious child. It is the hardest thing in the world to watch our children suffer. She is no longer suffering with mito. I pray that you find comfort and peace in this most difficult time in your life. May her grace shine and her memory live forever. Blessings and prayers,   Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 lauren hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehele Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Dear , I am so sorry and send my condolencesfor the loss of your precious child. It is the hardest thing in the world to watch our children suffer. She is no longer suffering with mito. I pray that you find comfort and peace in this most difficult time in your life. May her grace shine and her memory live forever. Blessings and prayers,   Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 lauren hi everyone, i have sad news lauren died november 30th her GI shut down (the g-tube and j-tube and by mouth wouldn't work) and with her having many more bad days than good we made a very hard decision and decided not to go with tpn lauren's quality of life this past year had decreased and suffering increased too much. we worked with childrens hospital's home care/hospice which i highly recommend they helped us with numerous things, one of which was on the last few days to keep lauren comfortable in closing i haven't posted too much on this site, however, i visit it daily and it has helped me tremenously-not only with learning things but also knowing families that also have a unique medically fragile child. i welcome any comments that might help my family thru this and i also welcome contact from anyone that thinks i can maybe help them thank you lisa ehele Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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