Update - Kennedy - TCS surgery

[Guest guest]

Kennedy, my 11 month old, had her detethering surgery at Duke with Dr. Fuchs

Monday morning and is doing very well. We thought she had a fatty filum

terminale and a lipomyelomeningocele and that the cord ended at the level of the

L3. When they got in there, she did in fact have the fatty filum cut but the

other tether was not fat or tissue; rather, it was nerves that did not form

correctly in a bundle like a tail that was pulling on her spinal cord. The

nerves were all tested and were dead/not functioning so they were removed. They

also determined that the cord actually didn't end until the L5, wow! That sounds

like a lot of stretching in a relatively short time (prebirth - 11 months). Her

recovery from anasthesia was horrible but her overall recovery has been very

smooth. We just finished day 5 of being flat (due to the more invasive/intensive

surgery) and Kennedy's bed will be elevated 45 degrees today - Hurray!!!

You can follow her progress at: babycoller.blogspot.com

if you are interested.

Thanks for all the support!

~Martha