The Lord knows her future

Well, life with Spina Bifida is a roller coaster of guessing what is the culprit. It is never easy to tell if symptoms are just ones not related to SB or what. We are awaiting to see if her current symptoms are just related to normal growth spurt issues or if the growth spurt has worsened her tethered cord which would result in needing detethering surgery. Arwen's internal foot/leg rotation has woresened over the past few months, but it had not affected her every day function of walking till recently. Now she has been tripping and having acute attacks of weakness in that leg. A huge sign of needing detethering surgery is usually major changes in bladder and loss of function/weakness in legs and feet. Well, the problem I have is that her bladder has been a horrible battle of change for over a year now, but had not shown any other symptoms till recently. So, we are asking for prayer for clear test results and the doctors to have wisdom as they help us make the decision if she needs this risky surgery. It is not guaranteed to work, and if anything it can actually make her worse depending on what happens when they release those nerves that have been connected to her spinal cord. If we wait though, we risk there being permanent damage, so it is no easy task making this choice. I have talked to many doctors and therapists these recent weeks and have tried gathering as much information as I can before we meet with Shriner's this week so I feel fully prepared to have an informed decision.
She is also having some issues that have us in contact with her colorectal team in Cincinnati now so I pray we do not have to make a trip out that way to help us figure that issue out as well. I have been in contact with her Neuro NP daily to update her on any changes so it is easier for me to document what has been happening. We won't hear from her actual surgeon for a few more days I assume to see if they want to move up her MRI. Which I am praying they will do, so we can get this ball rolling instead of a long drawn out guessing game. So, we ask that you please pray with us as she sees a new team of doctors this week and as we wait on her KC neuro to make the choice on her MRI to be sooner. Thankfully Arwen is not in ongoing pain or weakness. The oils and magnesium have helped her so much with those issues and the Lord has been gracious to her little body. I know He loves her more than I ever could and wants the best for her as well for her ongoing joy and His glory. Thanks for your continual love and support for Arwen and our family.





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