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.

Monday, July 19, 2010

Two Steps Forward, One Step Back

Well, the doctors were able to "read" the EEG from Tina's seizure last night but it has mixed results. They found that the seizures are not coming from the part of Tina's brain that they thought they were coming from. They had originally thought they were coming from a very interior part of her brain but based on her EEG they now believe that they are coming from a place much near the surface of her brain. On one hand this is good because there is less long term risk to removing part of her brain that is nearer the surface, but there is a problem. The depth electrodes that they inserted during her surgery last Wednesday are not in the correct location to be able to pin point a seizure focus that is nearer the surface of her brain. That means that they will need to remove the depth electrodes and replace them with electrodes that are placed on the surface of her brain (another surgery) and then once again wait for more seizures to provide the data necessary to locate where her seizures are coming from.

We were just given the word that Wednesday they will be going in and surgically removing at least some of the depth electrodes and then add electrodes to the surface of her brain. She will then return to the EMU and wait another week in the hope of having more seizures that will tell them where her seizures are coming from. Assuming that happens they will then likely do surgery a week from Wednesday (7/28 I think).

Please continue to pray for Tina. She doesn't always do well with sudden changes in plan and the reality of staying in the EMU for another week is not one she's real excited about. They are also telling her that the surgery to place the electrodes on the brain's surface is considerably more painful because they have to now remove a section of her skull to do this. Amazingly Tina has no pain at all associated with her depth electrodes, so again she's not all that excited about sitting in the EMU again but this time with pain.

Please pray for our Children as well as this will mean another week away from us. They are doing well as they stay with family but I'm sure it will begin to wear on them as time goes on.

Thanks again to all who continue to pray for us and send your notes of encouragement as we once again walk down a path that, at least to us, is "untraceable."

7 comments:

D & G said...

hey guys
Just want you to know we are walking the road with you as close as we can.

Anonymous said...

Matt & Tina

Again we read your updates with thankful hearts that you are resting in our Lord and His timing, but also with tears that it has to be even longer and with the possibility of more pain. Our continued prayers are with you, the kids and all your families!

Love
Dan & Hope

The Boes Family said...

Oh Matt and Tina! Oh....I'm praying for you. Good news and not so good news. Oh, .... Big hugs.

Dave and Kathy

Anonymous said...

Matt and Tina,
I am praying without ceasing that this is all over soon. I'm praying for the kiddos too and if there's anything I can do for them, please let me know!
Love, Amy

Anonymous said...

hey friends! i've had flashback memories of you often this last week reminding me to pray. there's an army behind you. all nighters in a hospital can't be as much fun as talking all night at women's retreat. love and hugs - Christine

Unknown said...

Hi Matt,
The kids are welcome to come stay with us for a night if they want to play with Abby and Hannah. We would love to have them. Just let me know.
John

Anonymous said...

Hi Matt & Tina,
I am praying for you and the kids. It is so true that God's plan for our lives is a thread we can not possible follow. Even when we can't see it, I know God is good, loving and in control. The one true God is more than able to take all the sin and sorrow of our lives and bring glory to his name.
Love you,
Aunt Carol