Early Easter morning, four and a half years ago, life for our family changed forever. I awoke to the sound of an otherworldly noise and Tina’s body convulsing uncontrollably. That event began us onto a path where we would discover that Tina was suffering from late onset Epilepsy. That path would include long periods of Tina being home-bound and a non-stop roller-coaster of trying to figure out which medications would strike the best balance between controlling her seizures but also limit the debilitating side-effects of chronic fatigue and loss of focus – that effort has only been marginally successful.

On July 14th 2010, our path took another turn when Tina underwent a five week long surgical procedure where doctors at University Hospitals in Cleveland Ohio implanted multiple electrodes into her brain in the hope that this would allow them to locate the spot in her brain that is responsible for her seizures and then surgically remove that spot in an attempt to control her seizures without medication. Unfortunately after 3 surgical attempts to locating this seizure focus, the clock ran out and the risk of continuing this procedure became too great, so they removed all of the electrodes, and sent her home with very little to show for our 5 weeks in the hospital.

When we left Cleveland two summers ago we couldn't imagine that we would go back anytime soon. Those five weeks in the hospital were very disappointing for Tina and difficult for our kids. However, over the course of the last year and a half, Tina's seizures have become progressively more frequent, and medications have become progressively less effective at controlling her seizures. So, after consulting with Tina's neurologists, it is clear that we are in for yet another turn in the path of life.

We will once again be making the trip to University Hospitals in Cleveland, and on Wednesday January 11th, Tina will once again undergo the same procedure to implant electrodes in her brain to monitor seizure activity in the hope that they can determine the physical location of her seizures and surgically remove it.

This is not a path that we went looking for nor did we anticipate how sharply our lives would change literally over night when four and a half years ago these seizures began. There have been days when we have wondered as to why these things were happening and what God was up to in this. What we have learned is best summed up by the Apostle Paul in his letter to the church at Rome where he said that the paths that God lays out for us are "beyond tracing out." We may not understand this path or where it’s leading us, but what we do know is that we would rather follow God’s untraceable path than to follow any path we could lay out for ourselves. This blog is our attempt to bring others along with us as we walk along God’s untraceable path.

Thursday, January 12, 2012

Settled In

We are now all settled in. Once Tina got her head rewrapped this morning she really started to go up hill. By the end of the day she's pretty much her normal self. She feels good - although still with a bit of a headache - and is trying to get a good nights sleep before the drama all gets going (hopefully tomorrow).


She took a long nap this afternoon, ate a good dinner sitting on the side of her bed, and spent several hours getting more electrodes installed on the surface of her head - the outside part. She still has her catheter in until the morning when they'll take that out - she didn't want to have to get up in the night to go to the bathroom. (I'm sure that was too much information, but that's ok, she hasn't started reading any of my blog posts so I'll be good at least until tomorrow.) The reality is that going into the bathroom with a 15 foot cable coming out of your head isn't the easiest thing to do, so I don't blame her for wanting to go one more night without that hassle.

She's feeling pretty tired so she's already down for the night. Not that I'm trying to get picky but it sure would be nice if she could get a full night's sleep and then start having seizures around 9:30am. Trust me, being woken up out of a dead sleep at 2:30am for a seizure is no fun. They come flying in, whip all the lights on, and start asking all kinds of questions... trust me not fun. It's much nicer (if there is such a thing) to have a seizure in the morning after a good night's sleep. But like I said, I'm not getting picky, I'll take it anyway we can get it. But for those of you who like to pray in very specific ways, there you go - simple partial seizures at 9:30 tomorrow morning... I'll keep you posted.
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4 comments:

Anonymous said...

O.K. it's 9:30 am. Is it happening? No school today, yea! Noah is still sleeping, megs and linc are playing games. still a light snow going on. Praying.....xoxo

January 13, 2012 at 9:36 AM
Kathryn Jones said...

I had a bad headache yesterday and I think half of it was just sympathy pains for Tina's tightly wrapped head! So glad she is doing better!! Love you guys! Praying for seizures soon!

January 13, 2012 at 11:05 AM
Leland and Marcia said...

Praying specifically for you both .....
with our love and continued prayers, Marcia and Leland

"The Lord is the one who goes ahead of you;
He will be with you.
He will not fail you or forsake you.
Do not fear or be dismayed."
Deuteronomy 31:8

January 13, 2012 at 11:32 AM
Pam Cronk said...

We are praying for you both....love you and know that God is in control!!!
Hugs~
Pam

January 13, 2012 at 7:15 PM

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