Trip to Mayo update (Asenath)

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Our trip to Mayo was brief but I think it helped to set in motion the operation that was orriginally scheduled for the last trip there. Dr. Whiteman said we need to do the Muscle and skin biopsy and hopes to convince the doctors of the need for the G-tube. I just don't understand why it is such a hard desision since she just won't eat more than a bite or two per meal at most by mouth. We can't keep the NG-tube forever and Dr. Whiteman doesn't want her to have it for more than one month so hopefully it will be done without a fight! The doctors here don't know why they didn't place it before. They thought it should have been done a long time ago to prevent the malnourishment issues she currently has. Anyway, we are scheduled to return to Mayo on February 26th and do the operation on the 27th and probably stay for 3 days following the operation. If anyone is there at the same time I would love to meet you. I asked Dr. Whiteman what he thought Asenath might have knowing it was only a guess and he said not to hold him to it but he thought it probably was a complex one issue. One issue we also have is the chicken pox she had right before everything started to happen. Some doctors felt that it caused her stroke but can't explain many of her other issues. Dr. Whiteman believes her metabolic issues caused her to react to the chicken pox and it weakened her systems to allow for everything to be set into motion. She has been bad since November of 2001 so it has been bad for her half her life now. Also, he feels it may be recessive genes causing it all (from both my husband and myself) which I could see somewhat but also strange that it wouldn't be from myself completely as I have had many symptoms since 1990 myself. I had a late adolescence to early adulthood onset so am up and down. Hopefully the biopsies will answer many questions and give a better idea of how to treat her. Thanks to everyone who continues to pray for Asenath. Also thanks for the person who suggested the book, "Joy in a Foreign Land" as it fits my husbands and my situation so much. My husband has a Pastoral degree and we had been actively pursuing Pastoral ministry until we were blown over by our daughter's condition. We definitely would serve in a position or go whereever God called us but all of this has kept us so busy and we know God has us where he does for a purpose. I really look forward to reading this book! Asenath still has loose bowels and won't eat anything to help it and the Pediasure doesn't help so if anyone has any suggestions, I am open. Has to go down a NG-tube unfortunately! Darla: mom to AsenathGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com