You never know what the future holds

As most of you know Arwen had an unexpected hard year last year due to needing de-tethered,major orthopedic surgery/casting and had a very difficult kidney infection admission. But the Lord thankfully granted Arwen with a patient and gracious spirit. She takes each medical battle with a strength and grace that can only be from the Lord.
Though my hearts bursts with fear/sorrow for her, I am grateful that the Lord has gone before her to prepare her for each hardship.

This year started with a big bang and for some reason tends to have the same pattern at the same time every year. We are not sure if her body has a growth spurt around her birthday in January or what exactly happens but her poor little body seems to act out year after year. Most years it settles down a bit by Spring time, but last year it worsened to the point of needing multiple surgeries. 
Most of you followed her journey last year with much encouragement, so thank you.
We were really hoping that would mean she would get a break for this year, but that doesn't seem to be where the Lord is leading. And we are trying to follow as He leads despite how hard it may be.

Though her Orthopedic surgery helped a lot of concerns she has had since birth, it unfortunately created new issues that we have yet to address as we have to travel multiple times to a different city. Lord willing we will be able to address that soon and her care will not involve any more surgery.
Insurance has unfortunately made it to where she cannot get the care the doctors have requested to ensure her feet heal the best way possible. It is very angering and heart breaking to know she isn't getting the care she deserves because of that. So, we ask for prayer as are non-stop fighting for her to get the Physical Therapy and Orthopedic care that she needs as it will be a forever struggle to fight.

As far as what the rest of this year holds..we have some plans in place but trying to listen to how the Lord will lead as we know it can change at any given time. Though her year started really rough again this year with a lot of Neuro concerns we are thankful that those big symptoms have subsided. That doesn't mean she is in the clear so the plan is to go back for another MRI in a few months to see if the syrinx on her spine has continued to grow. If it has grown that is where it gets tricky. We saw 3 different Neurosurgeons with 3 different opinions, so at that point we would have to decide what would be the best option for her which is no easy task. It is a daunting, fearful, and sorrowful feeling to know we are the main advocates for her care...BUT the reality is...we are NOT truly in charge of that task as the LORD is her true healer and physician no matter what choice we make for her. PRAISE GOD for that! 
If it has grown we will then have to decide if a shunt revision is what she needs. If her shunt is in working condition (1 Neuro believes is has been slowly malfunctioning for quite some time which is why her syrinx is growing)then they will have to consider de-tethering her at higher level than last year which could result in losing all function of walking and more. 
So, for this we ask for prayer for healing of her syrinx and direction for us get her the right doctor and choice of care.

Now, if that wasn't enough for this year lol...we are planning her major bowel/bladder surgeries for later this summer once we know her MRI results and plan of action for Neuro. 
Her bladder tests continue to worsen which shows us she needs to have these surgeries sooner rather than later. This will entail some very risky surgeries that could potentially  be life threatening so that is why her old Urologist told us he had hoped that her de-dethering surgery last year would have helped more than it did. But it will also give her independence that will ideally help her have continence that she desires.
I have consulted 4 hospitals and spent countless hours on the phone trying to make sure she gets the best care regarding this. After much prayer and research we have decided that Cincinnati will be the option for her to get the care for this. And her doctors in KC have respectfully told us they will help with follow up care as needed.
 With Myelo Spina Bifida she will have ongoing medical needs so thank you again for walking alongside us in prayer, encouragement, and financial help.

If the Lord leads you to help, we are having a Family FUN(draiser) Day in May that will help us raise money for our upcoming travel expenses to Cincinnati, St.Louis for Ortho follow up care, medical bills , and supplements/oils/health support for her every day health needs. If you ever have any questions on what all that entails please reach out to me as we are always an open book to the generous help we receive from people who love our family through difficulty.