Wednesday, February 12, 2014


"My hope is built on nothing less than...."  Hmmm....  My ability?  My connections?  Getting my way?
I have to tell you that today was Jon's big Doctor's appointment with the Neuro-opthemologist at UCI.  One we have been anticipating for a long time.
Did we love and trust the doctor?
Did we get the answer we had hoped for?
Are we without hope?
Why?  Simply because through this journey, we have found that if our hope is in... a doctor, a diagnosis, a hook up, an appointment... we will be devastated at every turn.  We simply cannot place our hope in those things.  We've tried.  It doesn't work.  Do we celebrate?  Yes.  Are we grateful?  For sure.  But we have been consistently reminded that our HOPE cannot rest on what is seen, but must rest on what is unseen.  For what is seen is temporary but what is unseen is eternal.  (2 Cor. 4)  We choose to put our hope on what is unseen.  On God.  On the Creator of you and me.  The One who does not change like shifting sand.  Or like health care providers.  Or like Doctor's opinions.  Or like the good and bad news that rolls in and out on a sometimes daily basis.  No, our God is constant.  He is good.  He is provider.  He is sustainer.  He is gracious.  He is faithful.  He is sovereign.  He is peace and hope and love.  That is where and in whom we place our hope.

What's interesting is that I came on here to just give a re-cap on our Doctor's appointment.  And then what came out of my typing fingers was that.  Hmmmm...  Friends, what's more important than you knowing about Jon's appointment is you knowing that God is good.  It's you and I knowing that no matter how much our circumstances change, God does not.   And that His goodness and power and sovereignty is not determined by what our circumstances look like.  Juggling thoughts on God and doctors and modern medicine is a tricky thing.  Around Christmastime, Jon shared on video with our church that he had realized he had inadvertently started saying to God, "Hey God.  If you don't heal me, I have a Doctor that will."  Somewhere along this road, he had taken his hope and moved it away from God's hands and into the Doctors hands.  And then when the Doctor said he couldn't help how we had expected, Jon realized the devastation he was feeling was because his hope had been hanging on the Doctor's words and ability.  Not on God's sovereignty.  It's those little "pings" in life that help get us back on track.  They help focus us.  They help remind us of who actually holds our future.  I'm grateful for those pings.  Those reminders.  Because although we walked out of today's appointment a bit shell shocked, we had not lost our hope.  We did not feel despair.  We are confident God is present and He is with us.  That is Good.

In our appointment with Dr. Crow, he informed us of 2 big things.

1) Jon is at risk of drying out his cornea.  This would not be good.  (huge understatement)  Jon needs to sleep with a special ointment in his eye every night and tape his eye closed - either under an eye patch or with gauze and tape.  Until now, Jon has been manually closing his eye at night and believing it stays closed all night.  Unfortunately, what is probably happening, is that his eye is "almost" staying closed.  So for 8-10 hours, his eye is getting dried out.  So he starts each day with major eye pain and it worsens as time goes on.

2) Jon needs eye surgery.  To protect Jon's eye from the air and debris, something needs to be done since Jon cannot blink on his own.  Until today, Jon and I believed getting a gold weight surgically put into his eyelid was the best solution.  This would allow him to blink!   We honestly were thinking we would be booking a "gold weight surgery appointment" today with Dr. Crow.  However, Dr. Crow informed us that yes, this procedure would help with that.  But it's kind of invasive.  They have to cut the eyelid back, do an incision across the lid, insert the gold weight etc...  He said all of this is fine and dandy if you are looking to have it in for the rest of your life.  But because Jon is only 4 months into his healing journey, there is still a chance that Jon's eye and facial paralysis could heal itself.  (This is always our prayer request.)  We will not know for certain until 12 months post op, if Jon's facial paralysis is permanent or if movement will restore.  If we did the gold weight and then his face restored, he would need to get the gold weight removed.  Thus, another invasive surgery to go through all those steps again.  Each time you do the surgery, there is more scar tissue, etc...  It's just not the best solution for a temporary fix - since we have 8 months of waiting left to do before we know what is permanent.

SO.  The Doctor said Jon needs to have Tarsorrhaphy.  Tarsorrhaphy is a surgical procedure where they partially stitch the eye closed. Meaning, they will stitch the corner of Jon's eye (the eyelids) together so it protects the cornea from air and debris and allows the eye to close more.  This is a temporary procedure and can be "undone" easily.  The ultimate hope would be that Jon's facial movement would restore and we could undo the Tarsorrhaphy when that happens and be done with it.  But if a year passes and Jon's face doesn't restore, we would then undo the Tarsorrhapthy and have the gold weight installed.  This basically is less invasive and would provide the protection needed so Jon doesn't lose his eye, while we wait to see if facial healing happens.  Wow.  A lot to digest, huh?

The neuro-opthemologist does not do this type of procedure - we would need to see an optical plastics surgeon to have this done.  There is a great one right in this same office at UCI, but yet again, we will need to "fight" our insurance to get it approved.  This journey has been one battle after another.  We press on!!!

Would you pray over these issues with us?
1) First and foremost, that Jon's facial paralysis would go away and full movement would be restored?
2) In the meantime, that our insurance would approve continued treatment at UCI?
3) That Jon's eye would be protected and his cornea would remain healthy?
4) That God would continue to sustain us?

And here's one more major one in a different area:

5) Jon is scheduled for his 6 month MRI at the end of next month.  (March)  This MRI will reveal if the 3-5% of the tumor that was left in surgery is dead or if it is still growing.  If it is still growing, Jon will start Radiation.  Would you pray that the little bit that is left is dead?  That right now, there would be no growth?  So that when we go in in 4 weeks, they say everything is good?

Thank you for walking this road with us.  I am starting to get the "EGR" feeling again.  (Extra Grace Required)  I feel like you might be thinking, "Seriously?? This journey is never ending!  I'm tapped out."  But I swallow my pride.   And continue to write.  Asking for prayer.  We are humbled by your support.

We are SO grateful God opened the doors for us to be seen today.
We are SO grateful to have received such trusted care.
We are SO willing to do whatever is best.  At whatever the cost.  Even if it means stitching Jon's eye partially closed for awhile.
Is it our first choice?  No.
Do we trust?  Yes.
Do we have hope?  Absolutely.

"I dare not trust the sweetest frame but wholly lean on Jesus name."

Thursday, February 6, 2014

I Choose the Happy Dance...

So Jon and I got to put our mad "I Spy" skillz to the test today.  (If you missed my last post, just know that we are working overtime to develop a keen eye...)  ;)

So anyway, we went to the mailbox to get the mail...

I Spy...

Ya.  I know what you're thinking.  I thought it too.  Letter from health insurance.  Bill from hospital.  Letter from insurance.  Bla bla bla.  I can't face that today.

Wait a minute.

Let me look closer.

I SPY...

YUP!  That first line says, "We are REVERSING OUR PREVIOUS DECISION..."

You know the eye specialist we were referred to at UCI that our insurance denied?  Well I've never been more proud to be an advocate for my husband.  They REVERSED their decision!!!!!!!   This is a HUGE answer to prayer.  This is a HUGE blessing!!!!   WAHOO!!!!  (Insert me doing the Happy Dance....  Doing the Jig... etc...)  Can I get a WOOT WOOT!?!??  This is GINORMOUS.  A door had been closed.  And it is now open!  God is good!!!  We are THRILLED.

Open other mail.

The next letter?  It was another "Denial" from our insurance.  They are denying our referral to see the head of Neurosurgery at USC.  We really really REALLY need to see him.  He's the best of the best.  And they said no.  Ugh.  You know the 3rd  letter?  It was a bill.   Like, the kind of bill with a comma in the amount.  Another Ugh.  But what do we know about that 1st letter again??  IT SAID MY HUSBAND GETS TO SEE AN INCREDIBLE NEURO-OPTHEMOLOGIST!!!   APPROVAL!!!!  REVERSED DECISION!!!  FAVOR!!!

(Insert another Happy Dance!!)

Roller coaster.  High!  Low!  Hope!  Discouragement! Celebration!  Pain!

This trip to the mailbox was just a snapshot of the life we all live, right?  There is good.  And hard.  And overwhelming.  And exciting.  And blessings.  And on...and on....  And all these things exist at the exact same time.  Within the same day, or even same hour sometimes, we can receive a roller coaster experience.   That part is out of our control.  It's called life.  But what we can control is what we focus on.  What we allow to consume us.  Do we allow fear and anxiety and discouragement to rule our hearts?  Because they are ever present, waiting to settle in if we allow it.  Or do we allow goodness and blessings to transform us.  Gratefulness and gratitude is ours to feel as well... What do we choose?  Where we focus will drastically effect our level of joy and peace.

The reality is, it's not that the bill isn't overwhelming.  And it's not that the new "Denial" isn't going to require my time and attention.  It is!  But before I dive into any of that, I have to celebrate.  I have to acknowledge The Good that happened.  I need to take the time to do the happy dance.   A door was opened.  A prayer was answered.  Favor was found.  Blessing received.  I don't want to miss it.  I don't want to take it for granted.  I want to soak it in.  I want to have eyes to see it in its fullness.  Anyone can Spy what is wrong.  The hard.  The roadblocks.  That's easy to pinpoint.  Jon often reminds me that anyone can shoot down ideas in a brainstorming session.  That's the easy part.  It takes much more skill to be the one to come up with the ideas while brainstorming.  Similarly, I am learning that it takes a skilled Spy-er to see that even when there is a lot of Wrong, there can be Right too.  It just takes a trained eye.

So today I got the opportunity to test out my developing skillz.
Today I saw saw the good, the bad and the ugly.
And you know what I can't believe?
Now if you'll excuse me, I'll be over here doing the Happy Dance.