The waiting game and needed Prayer

Well, as some of you know already the Urology and Orthopedics appointments we had last week were the worst/weirdest appointments we have ever had to deal with in Arwen's journey with Spina Bifida. Both surgeons pretty much refused to answer or listen to any of our concerns or questions and we walked away more confused than when we went in. I am sure they are a wonderful hospital for many patients, but after being treated so poorly after many attempts to get our questions answered we do not feel they have Arwen's best interest at heart, so we will unfortunately not be bringing her back there for further treatment at this time. Which is very disappointing since we continue to struggle to get her adequate medical attention for her ongoing urology concerns. The Lord provided an orthopedic surgeon in St. Louis that we have not seen before and have already been in contact with so we are hopeful that he will be a great help with her concerns after her MRI.
It is very difficult to find a team that treats her as a true patient and not a chart number. I am sure I am quite disliked as I do as much research as I can and will fight the normal system to ensure she is getting the best care possible. Especially when I know surgery is a possibility in her near future. I want to feel confident that we are making the best choice for her little body and feel that we completely trust the surgeon who will be working on her. At this point we don't even receive proper care for her daily concerns let alone feel that they can address major surgeries that will affect the rest of her life for her independence.
I will get off of my soap box now haha and ask for much prayer as we try to move forward with her care. Last we talked to her Neuro team they tried hinting that her current health issues are only an orthopedic issue, though everything she has been dealing with after this recent major growth spurt is classic tethering of the spine symptoms, so if her MRI is unchanged I am scared we could risk potential long term damage if we decide to wait on a detethering surgery. But at the same time we do not want an unneeded surgery, so I am continually praying for her MRI to show clear results of needed tethering surgery (if really needed) and discernment for her Neuro. If it is unchanged the problem is that we just do surgery based on symptoms and like anything else with Spina Bifida it could be from 1 thing like tethering or many individual issues related to her Spina Bifida. And since she is technically already tethered then it is not always a black and white answer.
So, over the recent weeks I have tried talking to many Spina Bifida families who have done the detethering surgery to get their child's symptoms that made them decide on surgery and ask many questions, so I feel very prepared to talk to her Neurosurgeon.
Physical Therapy has been helpful with the daily rotation problems and tight muscles thankfully, but she continues to struggle with bladder infections again and leg weakness. She is a fighter and doesn't let her daily struggles keep her down for long and we ultimately trust the Lord has this all under control. It is a hard spiritual battle for mamma's heart to know something is wrong and have to fight so hard to make sure your daughter gets the care she needs.
Her MRI is April 14th, but we don't get to talk to the Neurosurgeon until the 28th which is frustrating and so hard to be patient, but we are on the waiting list to be moved up.We trust the Lord has it in His perfect timing and my faith needs to be rooted in the gospel and not of man's ability to help her.

To learn more about tethering click the link below
http://spinabifidaassociation.org/wp-content/uploads/2015/07/Spinal-Cord-Tethering1.pdf

If you would like to donate directly to her medical funds that help cover her bills,Richards time off work, and travel expenses you can below by clicking on the PayPal link below

Thank you for your ongoing prayer, love and support for her and our family.