Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Ethan is probably dancing and singing with the angels. There are no seizures in heaven. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Ethan is probably dancing and singing with the angels. There are no seizures in heaven. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Ethan is probably dancing and singing with the angels. There are no seizures in heaven. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 I'm so sorry for the loss of your precious son. God bless you. Glenna > Nicky - > > > > I am so sorry it has taken me so long to reply. To our sadness, our > son Ethan (14 months old) fell asleep in death (I'm a big Bible reader > and that is the way its often time referred to). Since early in is life > the doctors and medical staff worked franticly to figure out what had > gone wrong with him. Since his birth he had difficultly keeping himself > oxygenated and had allot of trouble with feeding. His seizures ran > ramped causing him to turn blue around the mouth with many. We spent 7 > or 8 months in the hospital, most of that time in the NICU or PICU. We > tried the gambit of drugs, ACTH being the only one to have helped. He > was unable to do much, but cry when he was in pain and it was so nice to > hear him make a sound. He was such a special guy, and I know his life > was short but he hung in there for a year longer then most people > expected. And due to almost living in the NICU for months I learned to > be extremely happy for each day of life. I hope you don't mind me > sharing this; it's extremely helpful to me. The diet seemed to help > control the amount of seizure activity but his underlying condition > (most likely something metabolic, which means genetic) was just to > server. We loved and cared for our son the best we could and I truly > believe we can see him in the near future and that helps with coping. > He, like all of our Kid's was a special little person. > > > > > > I was unable to locate the dietitian, form children's hospital in > Philly but if you called then main number, and asked for > the ketogenic diet department they could probably help you out. > > > > I will remain apart of this list, because of all the help and support > that was given to us over the last 9 months and I can't bear to loose to > contact on all the updates. Thanks to everyone who read, and helped > with our situation. > > > > Regards, > > , mom to Ethan > > > > > > > > Re: Question re s Hopkins > > > > Thanks , > any info you can give me would be helpful, > Nicky > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 I'm so sorry for the loss of your precious son. God bless you. Glenna > Nicky - > > > > I am so sorry it has taken me so long to reply. To our sadness, our > son Ethan (14 months old) fell asleep in death (I'm a big Bible reader > and that is the way its often time referred to). Since early in is life > the doctors and medical staff worked franticly to figure out what had > gone wrong with him. Since his birth he had difficultly keeping himself > oxygenated and had allot of trouble with feeding. His seizures ran > ramped causing him to turn blue around the mouth with many. We spent 7 > or 8 months in the hospital, most of that time in the NICU or PICU. We > tried the gambit of drugs, ACTH being the only one to have helped. He > was unable to do much, but cry when he was in pain and it was so nice to > hear him make a sound. He was such a special guy, and I know his life > was short but he hung in there for a year longer then most people > expected. And due to almost living in the NICU for months I learned to > be extremely happy for each day of life. I hope you don't mind me > sharing this; it's extremely helpful to me. The diet seemed to help > control the amount of seizure activity but his underlying condition > (most likely something metabolic, which means genetic) was just to > server. We loved and cared for our son the best we could and I truly > believe we can see him in the near future and that helps with coping. > He, like all of our Kid's was a special little person. > > > > > > I was unable to locate the dietitian, form children's hospital in > Philly but if you called then main number, and asked for > the ketogenic diet department they could probably help you out. > > > > I will remain apart of this list, because of all the help and support > that was given to us over the last 9 months and I can't bear to loose to > contact on all the updates. Thanks to everyone who read, and helped > with our situation. > > > > Regards, > > , mom to Ethan > > > > > > > > Re: Question re s Hopkins > > > > Thanks , > any info you can give me would be helpful, > Nicky > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 I'm so sorry for the loss of your precious son. God bless you. Glenna > Nicky - > > > > I am so sorry it has taken me so long to reply. To our sadness, our > son Ethan (14 months old) fell asleep in death (I'm a big Bible reader > and that is the way its often time referred to). Since early in is life > the doctors and medical staff worked franticly to figure out what had > gone wrong with him. Since his birth he had difficultly keeping himself > oxygenated and had allot of trouble with feeding. His seizures ran > ramped causing him to turn blue around the mouth with many. We spent 7 > or 8 months in the hospital, most of that time in the NICU or PICU. We > tried the gambit of drugs, ACTH being the only one to have helped. He > was unable to do much, but cry when he was in pain and it was so nice to > hear him make a sound. He was such a special guy, and I know his life > was short but he hung in there for a year longer then most people > expected. And due to almost living in the NICU for months I learned to > be extremely happy for each day of life. I hope you don't mind me > sharing this; it's extremely helpful to me. The diet seemed to help > control the amount of seizure activity but his underlying condition > (most likely something metabolic, which means genetic) was just to > server. We loved and cared for our son the best we could and I truly > believe we can see him in the near future and that helps with coping. > He, like all of our Kid's was a special little person. > > > > > > I was unable to locate the dietitian, form children's hospital in > Philly but if you called then main number, and asked for > the ketogenic diet department they could probably help you out. > > > > I will remain apart of this list, because of all the help and support > that was given to us over the last 9 months and I can't bear to loose to > contact on all the updates. Thanks to everyone who read, and helped > with our situation. > > > > Regards, > > , mom to Ethan > > > > > > > > Re: Question re s Hopkins > > > > Thanks , > any info you can give me would be helpful, > Nicky > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi , I am so sorry and cannot imagine how you and your family are feeling and coping right now. I had not realised Ethan was so young and so ill. He will always be an angel watching over your family . Peace to Ethan, you and all the family,you are in my thoughts and prayers Nicola Quote Link to comment Share on other sites More sharing options...
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