Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Twana, Thank you for your reply...we really do try to "live in the moment" because these moments with her might not be here in the near future... When was Billy diagnosed? Have you met with Shoffner? Where do you live? What are his symptoms? Thanks...KK Re: blunt doctor Kris,Billy's dx is also a surf1 defect. The papers we have read on this dxhave the kids being terminal at 2-4 years of age. If you have theextra years be so glad! Billy is old for a surf 1 kid. He is 11. Iagree that the first time you hear that your child has a limitednumber of years you do feel that the doctor punched you. Even afteryou have heard it more than once it is still a punch! As for the bluntness, in some ways you want to know so that you won'tbe making the plans for college someday and instead can make plans forDisney World this year. You may find yourself trying for moreenjoyment now. I feel bad for you.Twana > BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will mostlikely take her from us between the ages of 5 and 8. Needless to saythis was like a punch in the stomach...he said her believes her issuesto be in the "SURF01" chain. Because of the difference in her MRI'sbetween 9/03 and 9/04 he feels she will likely regress with more brainlesions and "probably" respritory issues. I liked Dr. Shoffner, buthe is very blunt. What do you all think?Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Twana, Thank you for your reply...we really do try to "live in the moment" because these moments with her might not be here in the near future... When was Billy diagnosed? Have you met with Shoffner? Where do you live? What are his symptoms? Thanks...KK Re: blunt doctor Kris,Billy's dx is also a surf1 defect. The papers we have read on this dxhave the kids being terminal at 2-4 years of age. If you have theextra years be so glad! Billy is old for a surf 1 kid. He is 11. Iagree that the first time you hear that your child has a limitednumber of years you do feel that the doctor punched you. Even afteryou have heard it more than once it is still a punch! As for the bluntness, in some ways you want to know so that you won'tbe making the plans for college someday and instead can make plans forDisney World this year. You may find yourself trying for moreenjoyment now. I feel bad for you.Twana > BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will mostlikely take her from us between the ages of 5 and 8. Needless to saythis was like a punch in the stomach...he said her believes her issuesto be in the "SURF01" chain. Because of the difference in her MRI'sbetween 9/03 and 9/04 he feels she will likely regress with more brainlesions and "probably" respritory issues. I liked Dr. Shoffner, buthe is very blunt. What do you all think?Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.