Our trip started out on a bad note with Arwen being sick which led to shunt failure/uti confusion and spending hundreds of dollars on a cracked windshield,but praising God her sickness didn't turn into anything major. She did have uti but her symptoms subsided after my alchemist ways as my hubby calls it lol. (I used young living essential oils and natural supplements) Ultimately I know God was her true physician.
We are in the midst of learning a new bowel regiment and still working out the kinks but Lord willing this will be a great long term option for her to be continent. The malone surgery may still be an option for long term independence but we think she is too young for that option if we can avoid it.
We are meeting with rehab today to discuss 2nd opinion for braces. She has done really well with her current ones as of late, but still struggles with inward rotation and rolls her ankles.
Later this week we will meet with Urology for 2nd opinion on how to help her be continent between caths. She will undergo quite a few tests and blood work to help them figure out best treatment. We will meet with our urology team back home when we get back to discuss their results and advice from here before we make any final treatment decisions. Im nervous that this is the area of concern that she will need surgery since I dont believe in medicating long term. But I know God is always in control of her precious little life.
We've been blessed with a lot of downtime to enjoy sight seeing as a family. The kids have been pretty patient with us dragging them along to the appointments so we've been treating them to many fun things lol. Poor Arwen has tuckered herself out by walking non stop with her braces, undergoing not so fun regiments, and appointments each day so she usually crashes in the car by dinner time.
Please continue to pray for our health and safety, Arwen's ongoing treatments and tests, and for her doctors as they discern the best treatment for her.
We love and truly appreciate your support and care for our family.
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