Update from recent appointments

Like most of you know Arwen's MRI came back same as last year's and her Neuro isn't convinced it's tethering causing bladder change, leg weakness/pain and rotation so he told us to hold off for now in his opinion. But he wasn't saying no or that it couldn't help..which is the ongoing issue of how do we tell since arwen never shows classic signs of anything spina bifida related. We of course do not want a major life altering surgery if not needed but it is not a black and white answer.
We originally went to St. Louis this week to get updated tests from Urology and 2nd opinion from new orthopedic surgeon on her rotation and leg pain.
Both doctors said we have surgery and casting options but didn't necessarily feel comfortable doing them before we tried a detethering surgery because the root problem could be a tethered cord and doing those procedures before could make them reverse essentially. But of course they're not Neurosurgeons and can't say for sure if she needs the detethering surgery. So, we have a 2nd opinion for neurosurgery in a few weeks in St.Louis, but I'm sure like her history has shown that it will be a grey area of it could help or couldn't but we can't tell you for sure since she is tethered already and isn't showing 100% classic textbook symptoms for a yes decision for surgery. But I trust the Lord continues to have her little body in His hands and will give us peace and answers in his timing.
The surgeries for her bladder and bowels would be 4 separate ones hopefully done in 1 surgery. We unfortunately have been given 3 different diagnoses for the root cause of her foot rotation, but this doc wants to cast for 1-2 weeks at a time for a few times to see if stretches out her feet. So, we are having a hard time trying to figure out logistics since we have 5 kids, no vacation time for work,how to travel back and forth,etc.
 We would love to do all of her bowel and bladder surgeries in Cincinnati since that's where her current colorectal program is based that we love, but with 1 car, 5 kids and work issues,it does not look likely but we trust the Lord will help her little body no matter where he leads.
We are unsure of the timing for any of this as we have some big plans this summer that we don't want to affect, so we are thankful nothing is immediate other than looking into detethering sooner rather than later. We praise God that her urologist said that her current test results in another sb kiddo with no sensation would normally mean kidney failure, but since she has some sensation to tell us when to cath then that is what he believes has saved her kidneys.
We covet your prayers, love and support. It means a lot to have so many people care about her story and our family as we try give arwen the best fighting chance possible. If you would like to donate directly to her medical funds that help cover her bills,Richards time off work, and travel expense, you can by clicking on the PayPal link below.