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.

Saturday, July 24, 2010

Good News & Bad News

Today has been a day where we've had good news and we have had not so good news. First the good news.

The neurologist was able to look at the information that he got from Tina's seizures yesterday and his assessment looks very promising. It appears that Tina's seizures are originating from a very focused point in her brain and it also appears as though that point is not responsible for any critical functions in Tina's body. He is virtually convinced that surgery will be able to remove her seizure focus with no ill effects at all. He indicated that the most serious risk would be just the risk associated with the surgery itself not with removing part of her brain.

Now the bad news. In order for them to move forward with the surgery to remove her seizure focus they need to adjust her electrodes again. This will involve another surgery to move the electrodes, another recovery, and another period of waiting and hoping for seizures that give good and accurate data - all before they can do the final surgery. As of now we're not sure when this next surgery to move the electrodes will be. We're hopeful that they can get her in on Monday morning but we won't know for sure until tomorrow.

Although we're encouraged by the long range out look, Tina is very discouraged at the thought of another surgery and an even longer stay here in Cleveland. Yes we are aware that it could be worse. We could have gone through all of this just to be told that they couldn't operate or that there would be significant long term risk if they did do surgery, but I have never found the "it could be worse" argument to be very encouraging. Just because it could be worse or just because others may be worse off than us doesn't diminish the disappointment and discouragement of our situation. Tina is doing well at struggling through, but we would ask once again that you would send forth prayer to our loving and gracious Father to place his hand of comfort upon Tina and that she would experience the comfort that can only come from the one who knows all things and sees all things.

I received an e-mail from a good friend this morning who reminded me that Psalm 145 says in verse 13 that the LORD is loving toward all he has made. I know that my God is indeed mine and Tina's creator and so I hold on to the recognition that he not only made us but according to his word he is also loving toward us, which includes all the events of our lives. Sometimes I can't see how it could possibly be loving for Tina to have to go through another surgery. Why couldn't this be it and why couldn't he just make it so she could just go through with the final surgery? I don't know. What I do know is that the LORD is loving toward all he has made. That's what I know. So somehow, someway, even this "bonus" surgery is God showing his love toward us.

Once again it is God's untraceable path.
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5 comments:

Mike said...

Thanks for keeping us up-to-date. We continue you pray for you guys and the kids who I am sure deeply miss you .

July 24, 2010 at 5:35 PM
Uncle Johnny said...

Hang in there Beana : -) I can't understand Y ether...
Our God only knows what you will be able to take out of this to glorify his name. Or to minister to some one some day. We love you both. Hang in there too Matt. You are a very special guy. Always so proud of you : - )

July 24, 2010 at 5:45 PM
linusvpelt said...

love you guys. someday this will seem like a little blip of time that you went through to get better, though now I am sure it seems like an eternity to you and the kids.

July 24, 2010 at 8:37 PM
Anonymous said...

Hey Guys
Maybe they are enjoying the both of you so much, they are trying to keep you around a little longer. Love you both

A Mary & Charlie

July 24, 2010 at 11:33 PM
Anonymous said...

God is so evident in you both, and your faith is amazing. We are praying fervently for peace and comfort for you both and praising the Lord for the good news.
Drew & Sarah Owsinski

July 25, 2010 at 8:51 AM

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