Tuesday, December 17, 2013

Just an Update... :)

I have started writing and then erased this post several times now.  It's truly so silly, as I've now waisted so much time not writing a post.  LOL!  I've decided that because I'm so overtired and basically hanging on by a thread, I don't have the emotional capacity to sit and process and express.  I just can't.  I physically don't have it in me.  But that exhaustion has kept me from writing at all, which isn't helpful to our pray-ers.  You pray-ers want to know how to pray.  Which we so desperately need.  But I want to sit by a fire with a cup of hot cocoa and write.  I want to feel.  I want to confess and celebrate and wonder.  But as I (literally) collapse into bed every night, I know that the fire and hot cocoa and writing and feeling will happen.  Just not quite yet.  But can prayer happen in the meantime?  Absolutely.

So here's an update on the Ramsay clan and some ways we would SO appreciate your prayers:

1) Jon is physically doing amazing.  Anything that is within his power, he is doing to the extreme!  They told him if he felt his balance was good enough, he could try running.  Well guess who ran 6.5 miles this past week?  Yup!  Jon is Ladera Ranch's own Forest Gump.  :)  He has exceeded the doctor's expectations on strength and development.  However, his stamina is not strong.  SO, although you might see him with me out and about, what you don't see is the long nap he has to take before we go.  And the long nap he sneaks out to the car to take in the middle.  And the rest he needs after we get home.  His brain gets overstimulated fast, and unfortunately, it manifests itself in his eye.  Meaning, his eye is always in pain, but when he overstimulates his brain or goes too long or he gets stressed, in his words, he "feels like there's an ice pick in it."  He has done so well trying to be a good sport and "pushing it" a little to be a part of The Season.  However, he crashes as soon as we leave somewhere... So we are still trying to navigate that and find balance.  I'll be honest.... that's tough to do!

2) We have received a lot of mail from our health insurance provider that is stamped "Referral Denied."  This has been very frustrating.  There are some incredible specialists at UCI, but our insurance will not approve us to see them.  They want us to be seen by the 1 (one and only) specialist in our area that does the surgury(s) Jon needs. (instead of letting us drive the 20 minutes to Irvine)  This has been quite discouraging and frustrating, as we are dealing with Jon's face!  Something that is important and we for sure want the best care for!  It has definitely been a journey of faith and trusting that God will make a way, or that God will just allow us to get great care through the physician they approve.  Would you pray over that with us?

3)  Jon will most likely be having surgery on his right eye the 3rd week in January.  This will be the surgery where they will put the gold weight in his eyelid which will allow him to blink again.  We are anxiously waiting for the surgery date and are very hopeful that this surgery will bring Jon some pain relief.  Would you pray with us that it would?

4) Jon will hopefully (if the insurance approves it) be getting a test done on his 7th nerve/facial nerve soon.  This test will most likely be able to tell us if there is any life left in that nerve or if it is dead.  Would you pray that his nerve has lots of life in it?  We are still praying for complete restoration to his face.

5) If there is no life left in the 7th nerve, we will most likely book Jon to have the 7/12 Surgery.  This is where they take the 7th nerve and attach it to the 12th nerve (the tongue nerve) to hopefully bring some movement back to the face that way.  We recently had an appointment with that surgeon, and honestly, it was a horrible appointment.  As we left, I felt physically like how I felt physically the night in the ER when they told us Jon had a brain tumor.  It was that big of a kick in the gut.  Until this appointment, we were lead to believe that even if Jon's face doesn't restore on its own, this surgery would be able to restore movement for him.  Unfortunately, the surgeon we met with, told us that if the nerve was dead, there really was no movement that he would be able to restore.  He told us the surgery will basically restore some tonality to the face (keep it from drooping too much) but it wouldn't really promise any fine movement.

*Now this is where I have to stop writing on this topic because I just don't have it in me.  But there is a whole blog I will be writing on this appointment.  There was a lot of emotion and pain and shock and then major learnings from this appointment.  For now, I will just ask you to pray.  Pray that Jon's nerve would have life in it.  And that he wouldn't need the 7/12 surgery.

6) My hip.... My Orthopedic Dr wouldn't schedule my follow-up appointment until I had done both the MRI and the bone scan.  Jon called my Dr. as soon as I walked out of the hospital from having the bone scan to book my appointment, and he was told the soonest availability they had.... was Dec. 24.  (!?!?)  They felt horrible, but it's just the reality.  My Dr is in surgery 3-4 days a week and only in the office 1-2 days, so there is a long wait to be seen.  Now obviously by now, Radiology has looked at my tests and if there was any type of emergency, they would call me.  I'm not concerned there is something horrible.  Honestly.  From day 1 they were confident the tumor was benign and I've never worried that it wasn't.  The only bummer thing is that I'm in major pain some days.  It's so bizarre - some days I'm great, and some days I can barely walk.  My prayer is just that I would get in sooner than later.  And in the meantime, that the pain would go away.

Those are the physical updates from us as of today.  As for our family, please just pray for our sweet kids.  They are doing well, but honestly?  They are needier than usual.  Needy for attention.  Needy for time.  Needy for affirmation.  Needy for many things that I often times just don't feel like I have in me to give.  Please pray that Jon and I would offer love and grace to them.  Pray that God would miraculously multiply our sleeping hours.  (LOL! But really...)  ;)

We are so grateful for YOU.  We are so thankful for your love and prayers.
I am personally so grateful that you will let me just make a list here, of what we need prayer for.   With promises of Felt Things in the future.  :)

And now, I will sign off with The Blessing Jon speaks over our kids every single night as they lay in bed and we turn out the lights:

The Lord bless you and keep you.
The Lord make His face to shine upon you and be gracious to you
The Lord lift up His countenance upon you and give you peace.
In the name of the Father, Son and Holy Spirit.


  1. have not stopped praying. will not stop praying. Life can just be so overwhelming at times. You and Jon are loved by so many and once again, I am bowled over by your vulnerability. And I prayed that over our kids every night too!!

  2. I am praying for you now.....May God go before you and open the doors that need to be opened and may you rest in His Work on your behalf. That is hard....but He is able to do "exceedingly, abundantly more than we ask or can imagine".

  3. Far too much going on in our family, (yes you and your's are part of our family). All I want for Christmas is a God all mighty Miracle for the Ramsey's, the Richter's, the Peterson's. Tis the season for miracles!!!!