Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Hey all, sorry for my disapearance, but i wanted to update you guys on emma. Her update is on her website at Emmas Page . Also, I wanted to let those of you know that have websites for your children, I would LOVE to have them on our links page.. Please email me at Emmas2Hearts@... and let me know your site address and a breif (2-3 sentence) description of your websites content. Hope you all are doing well, and please read emmas update page on her website Blessings ~ ~ mom to: Easton ~ 5 yrs. Healthy! Elijah ~ 2yrs. Moderate Speech Delay Emma Grace ~ 16 mo. Heart transplant Histiocytoid Cardiomyopathy Unknown Mito Emmas Site Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 , I am so sorry how slow things are going for you guys. I would definitely get a Mitochondrial disease expert to look her over and do all of the necessary blood work and physical evaluation. Save the muslce biopsy for a last resort but I would guess that in Emma's case they may want to do one. Have you considered going to Dr Cohen at the Cleveland Clinic? I see you mentioned Minnesota. Are you meaning Mayo? Dr Whiteman there is a great dr. (he's a geneticist) who is great at this stuff. I don't know much about Dr.Shoffner except for what I have read. I understand he's really good at diagnosing but doesn't follow the patient afterwards. I could be wrong. I think any of those 3 dr.'s would ge able to give you more definitive answers on the mitochondrial aspect. Emma is a beauty! I love her little picture on the site. Take care and do get that mitochondrial evaluation. I think it will be worth your troubles. Love, Krystena sCaden s 4 yrs GAIIWarren 7 yrs unaffected 10 yrs unaffectedBaby Boy s (due 6-13-03) ? ~*~Please Read~*~ Hey all, sorry for my disapearance, but i wanted to update you guys on emma. Her update is on her website at Emmas Page . Also, I wanted to let those of you know that have websites for your children, I would LOVE to have them on our links page.. Please email me at Emmas2Hearts@... and let me know your site address and a breif (2-3 sentence) description of your websites content. Hope you all are doing well, and please read emmas update page on her website :)Blessings ~ ~mom to:Easton ~ 5 yrs. Healthy!Elijah ~ 2yrs. Moderate Speech DelayEmma Grace ~ 16 mo.Heart transplantHistiocytoid Cardiomyopathy Unknown MitoEmmas SitePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 , I am so sorry how slow things are going for you guys. I would definitely get a Mitochondrial disease expert to look her over and do all of the necessary blood work and physical evaluation. Save the muslce biopsy for a last resort but I would guess that in Emma's case they may want to do one. Have you considered going to Dr Cohen at the Cleveland Clinic? I see you mentioned Minnesota. Are you meaning Mayo? Dr Whiteman there is a great dr. (he's a geneticist) who is great at this stuff. I don't know much about Dr.Shoffner except for what I have read. I understand he's really good at diagnosing but doesn't follow the patient afterwards. I could be wrong. I think any of those 3 dr.'s would ge able to give you more definitive answers on the mitochondrial aspect. Emma is a beauty! I love her little picture on the site. Take care and do get that mitochondrial evaluation. I think it will be worth your troubles. Love, Krystena sCaden s 4 yrs GAIIWarren 7 yrs unaffected 10 yrs unaffectedBaby Boy s (due 6-13-03) ? ~*~Please Read~*~ Hey all, sorry for my disapearance, but i wanted to update you guys on emma. Her update is on her website at Emmas Page . Also, I wanted to let those of you know that have websites for your children, I would LOVE to have them on our links page.. Please email me at Emmas2Hearts@... and let me know your site address and a breif (2-3 sentence) description of your websites content. Hope you all are doing well, and please read emmas update page on her website :)Blessings ~ ~mom to:Easton ~ 5 yrs. Healthy!Elijah ~ 2yrs. Moderate Speech DelayEmma Grace ~ 16 mo.Heart transplantHistiocytoid Cardiomyopathy Unknown MitoEmmas SitePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 , I am so sorry how slow things are going for you guys. I would definitely get a Mitochondrial disease expert to look her over and do all of the necessary blood work and physical evaluation. Save the muslce biopsy for a last resort but I would guess that in Emma's case they may want to do one. Have you considered going to Dr Cohen at the Cleveland Clinic? I see you mentioned Minnesota. Are you meaning Mayo? Dr Whiteman there is a great dr. (he's a geneticist) who is great at this stuff. I don't know much about Dr.Shoffner except for what I have read. I understand he's really good at diagnosing but doesn't follow the patient afterwards. I could be wrong. I think any of those 3 dr.'s would ge able to give you more definitive answers on the mitochondrial aspect. Emma is a beauty! I love her little picture on the site. Take care and do get that mitochondrial evaluation. I think it will be worth your troubles. Love, Krystena sCaden s 4 yrs GAIIWarren 7 yrs unaffected 10 yrs unaffectedBaby Boy s (due 6-13-03) ? ~*~Please Read~*~ Hey all, sorry for my disapearance, but i wanted to update you guys on emma. Her update is on her website at Emmas Page . Also, I wanted to let those of you know that have websites for your children, I would LOVE to have them on our links page.. Please email me at Emmas2Hearts@... and let me know your site address and a breif (2-3 sentence) description of your websites content. Hope you all are doing well, and please read emmas update page on her website :)Blessings ~ ~mom to:Easton ~ 5 yrs. Healthy!Elijah ~ 2yrs. Moderate Speech DelayEmma Grace ~ 16 mo.Heart transplantHistiocytoid Cardiomyopathy Unknown MitoEmmas SitePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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