found the leak, coming home

okay, sorry I haven't updated in a while.
I've been doing lots of tests.
Lots of uncomfortable and painful tests.
They finally determined the exact location of the leak. It is towards the bottom of my spinal column.
I had another blood patch done this morning.
It was localized right at the leak in hopes of hitting it square on and sealing it up. The procedure wasn't as painful as the last one but my back is still in pain and sore. I have to lay down and not lift anything for a while during the healing process.

My head is not throbbing in migraine pain like it was this morning. But time will tell if this has solved my daily headache/foggy head pressure.

We are planning on flying home tomorrow, Friday.

I cannot wait to see the kids.
It has been almost 2 weeks that we've been here and a week before we left I was laid out and couldn't take care of the kids. So really, it feels like an awful long time since we've been together as a family.

We've been told that the kids are doing well, although they miss us. We are thankful for family who have made this possible for us, especially in providing a safe and secure atmosphere for Jeremy.

Please pray for my endurance and recovery.
I've been poked and tested, stuffed and drained for the past two weeks. My body has undergone so much. My muscles are rebelling and if this last procedure doesn't work I don't know if I have the stamina to endure any more.

We're going home: that's all that matters to me right now.

Andrew has been a wonderful advocate, looking out for me. I am thankful that God has put him in my life. He is the perfect balance to me and knows what I need and how to take care of me.

The LORD will be a stronghold for the oppressed,
A stronghold in times of trouble.
And those who know Thy name will put their trust in Thee,
For Thou alone, O Lord, dost not forsake those who seek Thee.
Psalm 9:9-10

Friday morning I had a CT scan. What an easy deal! Whew. In and out, done.

We met with the Ear Nose Throat (ENT) Dr. later that morning. After all the tests and exams and looking at the CT scan he couldn't find any evidence of spinal fluid leaking (SPL).

He said he is 98% sure that I don't have a leak.

That is okay by us, we want the right answer not just any answer.
But honestly...REALLY??!! What other thing can it be? What other dead end road is waiting for us to travel down it?!

I can't say enough appreciation for our neurologist. He talked with the ENT and they discussed what to do next. He also talked with other neurologists, that he meets with to discuss difficult cased, about my situation. He said he will call us on Saturday to let us know what he wants to schedule next (on Sat.! Going out of his way, very nice of him).

The only things that point to a SFL are my symptoms of headache relief when I lie down and the test we did in Fresno with radiation that was put into my spinal fluid and was found on the matierial they stuck up my nose (which means the only way to get their is leakage draining out). So they will probably do a repeat of that study to find out if it was done accurately. Because when it was done it wasn't full and complete in their scans and readings.

This morning we hiked around Silly Mountain, just a few minutes away from where we are staying. It was quite a hike. The landscaping here is mostly rocks, dirt, shrubbery, and tall cacti. In fact the dirt was mainly small crushed up rocks. Beautiful in it's own colorful way.
It was great walking around after a week of waiting and sitting.
But afterwords my head was killing me.

We are staying with Andrew's Aunt. She is hospitable and easy to be around. She has made it relaxing and comfortable. It is such a blessing to stay with family rather than at a hotel. It is about an hour away from the Mayo Clinic.

THANK YOU FAMILY AT HOME TAKING CARE OF OUR KIDS.
We know that it is exhausting work, and although we know you love it and don't think twice about doing it, at the same time we realize that it takes extra effort and energy. I wish that I could be like Star Trek and beam the kids here and back. It's so tough being away from them.

tick-tock, goes the clock

We saw the Ear Nose and Throat (ENT) doctor at 9:00 this morning.
Unfortunately after he did tests, examined and questioned me he isn't convinced that I have a Spinal fluid leak.
He wants to run a CT scan that will better show if there is a leak.
We were told to wait for them to contact our insurance for approval then they'd call us with the schedule for the CT scan.

It's 2pm and we're still waiting.

It is so hard to wait. I don't want to be away from my kids any more than I have to. Each day that we aren't making any progress is another day away from them.

My worst fear is that they are going to keep doing these tests. Still find conflicting information. Never come to a conclusion and the answer will be, "you'll just have to live with this."
I don't think our neurologist here would tell us that. He's pretty determined.

I really miss my kids.
I hardly saw them last week because I was in such pain.
Honestly, I am discouraged right now.
I know what is true and right and am thinking on those things and our Faithful God who holds us in His hands.
I just wish it could be easier.

We saw the Neurologist today.
More tests tomorrow with an Ear Nose and Throat Doctor who will pin point the leak.

Arizona

I will try and keep you updated while we are here at the Mayo Clinic.
I won't be able to post any of my own pictures until I get back.

Last night we arrived here on one way tickets. We are hoping to get some big time head way with fixing the spinal fluid leak and eliminating these headaches.
We had a relaxing and romantic evening at the Fox Sports Grill watching Monday Night Football. :)
Actually, it was quite fun. The atmosphere was exciting and lively. I'm not a huge football fan but last nights game was great. We only stayed 'till half time 'cause that's all my head, and body, could stand for one day.

This morning I had an hour and a half MRI. Glad to have that one over. It wasn't too comfortable laying on a hard table completely still. My joints were in pain, stiff, and terribly achy.
Tomorrow we consult with the Dr. about his observations.

The kids are at home being taken care of by wonderful Grandmas. It is such a blessing and relief not worrying about them, knowing they are in good care.

What is normal?

Normal, for me,

is constant pressure and ache in the head.
When the normal gets taken away
and exchanged for dreadful then,
when you get the normal back,
it becomes so beautiful!

I'm not quite there yet, but I can feel myself getting back into the "normal".

I still feel a bit fragile.

In fact, just after I told Andrew that I was feeling more like my old self, I kept saying words backwards or mixed up.

Then I got my coffee cup out
and went to pour in the milk (I like to warm up my milk before I put my coffee in so it doesn't cool off the coffee).
Well, I began pouring my milk onto the BOTTOM of my coffee mug, the mug was upside down.

I just had to laugh.

I felt like a crazy person thinking that they were sane but all the while they are crazy so how could they say they were sane if they don't know what sane is?!

The kids are doing great through all of this.

We are thankful for the family and friends who have generously helped us with taking care of the kids and providing meals.
I could not have lived through this week without you!

Even last night when I was feeling better I ended up having to put ear plugs in because my head was still sensitive and I felt like I was in a small room with a circus!

Andrew has been my knight in shining armor.

He has taken on his normal work load and come home to chaos and dealt with it all in stride. He has served me and looked out for my needs. He's been on the phone constantly dealing with hospitals, insurance, doctors and airlines trying to get things worked out.












We are leaving on Monday for Arizona,
Mayo Clinic!
I don't know much more than that they are going to run me through some more tests.
I don't know how they are going to fix this.
I don't know how long we will be there.
I don't know....?


But I do know we are GOING!

I do know that we are on the right track for healing.

I do know that God has taken care of us this far and He will continue to care for us and guide us through the next steps.

What a different perspective life takes on when you brush your teeth laying down on the bathmat.

Today I am feeling a bit better. I have been able to walk around every now and then without my head instantly going into a migraine.

No word yet on when we'll be able to go to the Mayo Clinic.

My heart has such sympathy to those who are in bed rest regularly.
From this point on I will regard them with more compassion and understanding.
It is not hard laying down, but it is absolutely the hardest thing to do when it is all you can do.