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."


  1. Deanna & Jon, we continue to pray for you. With love ~ Uncle Elwood & Aunt Lorraine

  2. The Lord knows what is best for all of us! The Doctors can only do so much to make us better, and right now they are waiting to see if Jon's body will repair itself in time! If they can just tape his eye at night for now, maybe that will keep him from having so much pain in the morning! My prayers are with you always.. Much Love to your family.. Lillian...