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, July 22, 2010

A Quiet Day

Today has been a better day for Tina. She is still very tired and has been taking pain meds on a regular basis. This evening she is definitely starting to perk up a bit though. She sat in a chair for 3 hours without much pain, which the nurses are simply amazed at. Her face is quite swollen and she's talking meds to try and keep the swelling under control. The good news is that the surgeon was very surprised this morning at how little swelling she had, as he expected much more. Everyone keeps cracking these jokes about surgeons who "beat up" their patience. Medical humor - it's lost on me.

Tina has not had much of an appetite today but has been able to eat some and keep it down. Hopefully she can get a full nights sleep and wake up rested and refreshed because it wouldn't surprise me if she is put on sleep deprivation tomorrow night - I'll keep you posted so that all you Facebook people can take shifts throughout the night chatting away with her. As you have guessed sleep deprivation means we are back into the mode of needing for Tina's brain to produces some recordable seizures that will provide the necessary information to take the next step toward surgery.

We did receive some good news today regarding the future steps, assuming we get there. If they are able to find her seizure focus and if that seizure focus is operable the pain associated with that operation will be considerably less than the last two surgeries. Because they put the piece of Tina's skull that they took off yesterday in the ice chest (next to the mustard and pickles) rather than back in her head, when they go in to do the surgery to remove the seizure focus there will not be any more significant trauma to her head which means less pain. This is very helpful for Tina to know that the worst is now over regardless of how this all turns out.

We received a bunch of letters from the kids today. We were amazed to open one big envelope from Noah with a bag full of hair in it. For those of you who haven't seen Noah lately he has not had his hair cut in about a year and a half - but along with the bag full of hair was a series of six pictures that chronicled Noah's tribute too his mom as he had his grandpa not only buzz his hair off with the clippers but shaved it right down to the skin with a razor. What an awesome kid.

Today has been a very uneventful day, which is good. I think that I really crashed this morning. I couldn't hardly keep awake even after getting my Starbucks from the cafeteria and so I took a couple hour nap along with Tina. (Yes they have Starbucks, although I'm a bit suspicious that it's not quite up to the normal Starbucks standard.) It's amazing how sitting on your butt all day reading, watching TV, and surfing the Internet can really take it out of you. I'm going to try and get to bed a bit early tonight in the anticipation of doing another marathon sleep deprivation tomorrow.

Thanks again for all your prayers and support they mean more than you can imagine.
Posted by at

7 comments:

D & G said...

isn't it kinda cheating to rest up before sleep deprivation. Kinda like gorging yourself before a fast...or a diet coke with your Big Mac. Love you guys- hang in there

July 22, 2010 at 7:48 PM
Anonymous said...

Thank you for keeping us up to date on Tina's process and progress! I think of that sweet little thing all the time and pray for you when you when those thoughts come! Know you both are loved and being prayed for a TON!

Kelly Griffin

July 22, 2010 at 11:27 PM
Craig Clark said...

You should probably shave your head as well then, eh?? Or, at least the goatee! Hang in there, guys. God is walking you through this.

July 23, 2010 at 9:25 AM
Anonymous said...

We are praying for you everyday.
Aren't your kids great!
Aunt Barb

July 23, 2010 at 10:22 AM
Anonymous said...

Wow! So, this must be one of the "for better, for worse, in sickness and in health" moments in a long and rich marriage. I'm always encouraged by stories from journies of faith and love, like yours.

The Men's Fraternity leadership team at Vineyard North is praying for God's healing.

Ray Befus

July 23, 2010 at 1:22 PM
Anonymous said...

Craig, Matt can shave his head but he needs to leave the goatee! Otherwise he won't look any older than Noah :).

Tina

July 23, 2010 at 1:35 PM
Amanda said...

Dear matt and Tina

I am so thankful to have seen your heart over the years and how you are handling this time is of no surprise. We continuing to rejoice and grieve with you far away but united in Christ.

July 25, 2010 at 5:02 PM

Post a Comment

Subscribe to: Post Comments (Atom)