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This is the first time posting to this group. My daughter, Mackenzie,

has a tethered spinal cord. She is almost 4 and has had 5 surgeries

for untethering. We just finished a really tough time over the last 9

months. We had an untethering and ended up with bacterial meningitis.

She then had hydrocephalus that required a VP shunt. She also started

leaking spinal fluid and had to 4 surgeries to repair the leak. On top

of that she had a lumbar shunt put in to try and help the spinal fluid

leak. We now are getting ready for another surgery to remove the

lumbar shunt. But we also found out a week ago that she has an

indirect hernia and will be having that repaired also. My daughter has

a neurogenic bladder and has to be cathed 4 times a day. During her

last untethering we also had some nerve damage to the bowel system and

are having a really tough time with that. We have not been able to

potty train and at this time it has not been a priority. Thank you to

whoever created this group as tethered spinal cord is a tough disease

to have.

Jana

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