Update

Nothing like waiting almost a year & a half to update on here!  Things got crazy & facebook seemed like an easier way to give a few quick updates here & there.  And honestly, ever since Casey's surgery this past February the outpouring has been so HUGE from everyone.  I promised myself I would do a few things....1. Personally write a thank you to each & every one of you who sacrificed so much for to generously provide food, financial help, or other amazing things.  2. Once I finally did that, I would finally pick up the blog.  I'm approximately 25-30% of the way through those cards, tho.  Mostly because this life since Feb has been so very full.  If I never get to write a personal thank you to you, please know that we are beyond grateful.  You carried Casey & our family through a difficult & painful surgery, we are beyond humbled & so very grateful.

Now it's time for an update.  Maybe I should back up even more, just in case a few of you didn't catch details on fb.  Case was blessed to get the most experienced neurosurgeon at Mayo Clinic working on him, & his team went in to try to repair a cervical spinal leak back in mid-February 2018.  The goal was to find the tear in the dura (sheath around the spinal cord that keeps in all of the spinal fluid) & sew it up.  Instead they opened him up & found that the entire dura they saw (3") was completely abnormal.  A normal dura is thick (he compared it to cardstock) & tough, and white in color.  Casey's dura is clear & as thin as Saran Wrap-- and it appeared to be leaking not at any one location, but just a generalized weeping along the entire 3 inches they were looking at.  The best they could do was to fill it with foam & glue-- & then close everything up & hope it would heal.

Healing has been hard-- a back surgery like that is painful & the muscles hurt pretty bad during the healing.  Casey also had the positive pressure effect of a spinal fluid leak trying to repair itself---the brain that had compensated for the leak now found itself with too much pressure & it had to work to balance out.  After awhile things improved for him, probably at about the 6-wk mark.  In the last month now, we are about 12 weeks out, we have come to find that Casey is getting the same spinal leak symptoms as before.

In fact, after he did a long morning last Sunday of teaching a class & preaching, he was in a pretty bad state.  We ended up getting a last-minute appointment Monday morning with his Mayo dr (this happening at the last second was nothing short of amazing!), and he said he thinks it looks like the spinal leak is probably back.  Thankfully, the fever that ended up spiking did not concern him.  He said the MRI scheduled for this week will help them know more, but he also said they might be at the end of what they can do for him at Mayo Clinic.

We came home grateful, but it's been not fun to think for us to consider Casey's current disability as a permanent thing. This info was so helpful, though-- allowing us to take time to process what things we want to ask if this is our last visit in awhile.  So many questions arise regarding how to approach life if he is to possibly have this disability long-term.  Casey has been fighting so long & hard with all of this, he does such an amazing job of trying hard to be present & loving for our family-- and he continues to work hard at being the best pastor he can be.  Usually he has anywhere from 45-90 minutes (it really varies each day) that he can be upright at a time-- and then he has to lay down for awhile to relieve the spinal pressure.  Much of life can be worked around this, & he has more stamina in the morning as he starts the day.

For now, we wait & trust.  We cry at times-- the big kids have needed to process & cry.  It was kinda traumatic for all last Sunday afternoon when Casey neurologically was messed up--crying hard without reason, needing help to walk, shaking with his chills, etc.  Even still I've been amazed at the strength of this man & these kids. Casey has been a joy through so much of this-- he keeps his heart focused & hoping in God for each moment. I'm grateful that this hard road I would never have wanted for my kids-- NEVER -- in the midst of it God still is answering our prayers for our kids.  More than anything I want my kids to know God & love from the depth of their souls-- both are happening through this.   At times this stressed-out momma can barely hold her junk together-- kids still bicker & fight -- and it's a classic home with our own dysfunctional flavor.  But also, we are all learning to be a little more grateful for milestones that used to be "normal"--- because now they are something to celebrate:

* Casey took off work to take Henry out for a breakfast on his birthday-- a huge treat to get away alone with dad.
* Merian had her first soccer game & Casey could watch the ENTIRE thing!  Yay for zero gravity chairs (& even better-- yay for one popping up at a thrift store!)
* Casey saved energy (& upright time) to watch Emmett's baseball practice one evening this week, & it meant the world to him.  That kid looked over at his dad so many times, pretty much eleated to have him there.
* Tonight Grandpa Gary took Merian to the father/daughter dance at our school-- we are so blessed to have my parents living nearby helping us out!  Merian was thrilled to go with her grandpa & dance the night away--- they had a blast.

As we finish packing to hit the road for Mayo again this afternoon, I ask that you would pray with us for this (possibly our last) trip.  Please pray for wisdom for the doctors on this odd situation, the surgeon said he’s never seen anyone like him.  Pray for our kiddos as we leave, I can see in their eyes that they worry for Case (especially after last week's ordeal!)-- pray that they can be at peace & enjoy time with their grandparents.  Pray that we can have safe travels, ask the right questions, & that Case can have the strength for the long days at Mayo.  And healing-- we continue to ask God for complete healing!

We are staying at the same spot as last time, a cute little apartment with a sweet God-loving couple hosting it-- just a 2-block walk so hopefully Casey can rest between appointments.  The amazing hugger Jolyn provides Aveda products, yummy snacks, a darling 50s apartment, & Caribou coffee--- what more could we ask for in a romantic getaway?  Casey was a bit preoccupied the one night he got there as he had surgery prep to do-- and I only crashed there to sleep.  This round will hopefully be better!

May we choose to hope in God, each & every moment.

I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people. 
Ephesians 1:18