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Welcome to Abigail's page! This page has been created to keep friends and family up to date on Abigail's condition, and that of our family.
Journal
Thursday, July 28, 2005 7:45 AM CDT Hello Everyone...it has been a very long time since I have posted news in regard to Abigail.
Since Abigail's decline directly after having her tonsils removed, amazing things have happened. Just when we were standing with our heads in our hands praying that we didn't sign her death certificate by saying ok to the surgery...she began to get better and better and better. Abigail is now running, jumping, dancing, singing, and acting as any 3 almost 4 year old would. She looks amazing!!!
The illness is still there. CPK levels are still high, and Abigail continues battle weakness...However, she is developing far more normaly than she ever has since we began this journey. Having her tonsils out was indeed a bold and productive move.
Earlier this summer the idea of having a liver biopsy was put before me. Quickly I became rather unpopular with the doctors associated with Abigail's case as I declined the biopsy.
The reality of Abigail's disease is that there is no cure, and there are very few treatments. They can continue to take sample tissues from her body, but it will not benifit her in anyway. They may learn something of interest in regard to how the disease progresses, but they will not beable to stop what is happening to Abby.
We continue to test her urine on a regular basis, and we continue to keep an eye on her CPK levels. We will be having a follow up sleep study in September, however there will be no further biopsies for general study.
:)
And that is that! :)
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