The Merry-Go-Round of Life

With much consideration, it was decided by the doctor that the big, bad seizure of August 1st was brought on by sleep deprivation.  The sleep deprivation was brought on by chronic pain.  The chronic pain was brought on by a severely herniated (ruptured, actually) L5/S1 disk in Chris's back.  The final blow to the herniation was no doubt delivered when Chris tumbled out of bed during his seizure.  And so it goes.  The merry-go-round of life.

When the pain grew too intense to bear and 8 months of alternative therapy, rest, etc. didn't help, Chris underwent back surgery.  The risk of another sleep-deprivation induced seizure was too great.  The pain was debilitating.  Chris chose his neurosurgeon, who implanted electrodes in his brain last October, to perform the surgery.

The surgery was successful.  Now, a week later, Chris is off pain meds and just trying to heal from it all.  As the doctor said, "As long as he doesn't do anything stupid, he should be great!"

Here's to our young adult sons not doing anything stupid.

~ epimom ~

Here We Go Again...

August 1, 2012

"Today started out in the worst possible way." That simple acknowledgement on my son's facebook page said it all.  And those who know him knew exactly what it meant.  Another seizure.

We here at home knew it meant more:  Life on hold again. No more driving. Blood tests. Doctor visits.

This seizure, only the 3rd tonic clonic (gran mal) in his lifetime, was by far the worst.  In fact, by the time I discovered him as I knocked on his door in the morning to say goodbye before leaving for work, he could have been well into multiple seizures.  It took him a good 3 days to fully recover and feel like himself again.

Why does his brain insist on messing with the best-laid plans?  Why can't it just stick to the "normal" nocturnal complex partials that don't hurt anybody?  How will I ever let my son move out again & trust he will take the necessary precautions to manage these crazy brainstorms?

I added a date to my memory bank that day.  I'm like most people, keeping lists inside my brain containing the dates of birthdays, anniversaries, milestones... and the big seizures:  October 9th, 2009, July 4th, 2011, August 1st, 2012.  The days life stood still, and then took a turn in another direction.

And a Little Dog Shall Lead Them...

June 19, 2012

Dear family and friends:

So many of you have so graciously asked me for info about what is going on with Chris and his brain mapping, that I thought I would share some recent developments.

First of all, there is not much to report on the brain mapping front, with regards to moving forward to surgery.  Two appointments to be admitted to the hospital have now come and gone, January 10th and May 31st, and both have been canceled because the radioactive isotope needed for the next test (SPECT or Single Photon Emission Computed Tomography) is unavailable and currently out of production.  There is FDA red tape involved, so that's another very long story.  Suffice it to say Chris can not move forward until he has this test, which we are told is 90%+ accurate for mapping seizure focus.  Since his seizures are coming from the frontal lobe, and they suspect very near his speech center, there will be no talk of resection surgery until they are absolutely sure the focus is in an operable location.  So, we wait.

In the meantime, Chris has been stable on his meds and hasn't had a seizure (that we know of - they are nocturnal, after all) for several months!  Dr. Sutherling is very happy about that!  The med side effects are just a daily fact of life, and one of the reasons Chris would one day like to have surgery and at least be on a lower dose.  For now, the doctor's instructions to Chris were to "get on with life." It could be several months before the isotope becomes available and he can be admitted for the next test.

In another development, Chris has been blessed with a gift that we could not have guessed would have had such a great impact.  A friend contacted me several weeks ago, saying God told her to give one of her Golden Retriever puppies to Chris "for his recovery and healing."  Wow!  I was speechless - and let me tell you, that sweet puppy has given Chris what we could not = a vision for his future.  I heard him tell more than one friend, "this dog is going to see me through the next 14 years of my life... he's going to be with me when I graduate from college and get married, and he'll play with my kids!" I still get choked up remembering his words.  The other day Chris said to me, "mom, this puppy is the BEST thing that's happened to me in a very long time!"  They truly are best buds, and Samson wants to go with Chris everywhere.  I am so grateful to this sweet friend for hearing God's voice and providing such an incredible blessing!

For now, Chris has survived the first big wave of layoffs at our local supermarket, and that job has truly been great for Chris.  He's been there more than 2 years now and really enjoys  his co-workers.  He has also recently started an internship with a startup company of college grads who are working very hard to build a promotion and marketing company, which is very exciting for Chris, and exactly the area he is very interested in.  He may even get paid one day!  In the meantime, he is learning so much, and as assistant to one of the partners - he is BUSY - which I'm grateful for.  

As far as the future, it's so hard to make plans when Chris could get called up at any time to spend a week in the hospital for the SPECT test.  His leave of absence at his university has ended, but going to classes full time would still be very difficult for him, given the side effects of his meds he is dealing with.  Perhaps a class or two at the community college will be in the plan for this fall.  

So, I'm happy to report that Chris is doing well right now.  This process has turned out to be a much longer journey than we ever thought it would be -- and filled with uncertainties and waiting.  We actually thought he would be in the recovery process after surgery right now.  But God has other plans, and since HE knows the big picture, we are trusting that God's timing for everything will be just right, and that someday we will see the reason for the delays.  

Your prayers, as always, are so appreciated.  Take care, all, and have a wonderful summer!

With love and appreciation,

~ me ~

'For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

Delays

January 9, 2012

I received a call from the doctor today canceling tomorrow's hospital admission date for Chris.  The radioactive isotope they ordered in November for this test is still in a national shortage, and the order did not come in as of this morning.  They will call us when it arrives, and Chris will probably be in the hospital the next day.  I'll keep you posted.

And so, we wait...

Blessings,

~ me ~

Ictal Spect Finally Scheduled!

January 7, 2012

Dear family and friends~

It's been awhile since I've updated you about Chris.  The brain mapping process is long and tedious, with a committee of doctors meeting to discuss the results of each step.  Meanwhile, Chris is doing well.  He is feeling better now since the complication of the slight bleed when he had depth electrodes.  Once in awhile he still has a day where he feels like it's difficult to come up with the words he wants to communicate.  The doctors treated him as a stroke risk (no lifting, no cardio, etc.) for 2 months after surgery until his brain was fully healed, but now he's back to normal, and even got to spend a day at Legoland with his little cousins this week and had a great time!

The next step in his brain mapping process will begin this Tuesday, January 10th when he's admitted back into the hospital for an Ictal Spect test.  This will involve lowering his meds to induce seizures.  Once seizures begin, he will be injected with a radioactive isotope during a seizure, then have a brain scan within the hour.  This will highlight the blood flow activity in the area of his brain where the seizures begin.  It will be tricky for them to do the injection during a seizure, as they last just 20 seconds or so most times.  It will be interesting, to say the least.  This is a non-invasive test so we are not concerned about the process.  

All the brain mapping tests so far have indicated the seizures have a focus in the right anterior frontal lobe, which is why they are being so careful to find the exact location.  The temporal lobe can be resected and for the large part, the other side will compensate for what is removed.  We don't have that luxury with the frontal lobe, since every area has such a specific duty in the body.  In this case, the focus appears to be near Chris' speech and hand movement centers, so there is still a chance it may be inoperable.  One day at a time.

We covet your prayers through this process, as always.  Please pray specifically that the doctors will be able to locate the exact focal point where seizures begin, that Chris will be able to make the right decision regarding surgery based on the information we are gaining, and that PEACE will wash over us through this whole process.

The adventure continues this Tuesday - I'll update you as soon as we have some more information!

With Love and Thankfulness for YOU,

~ me ~

A Grateful Heart

December 5, 2011

My dog practices the fine art of having a grateful heart.  Even in his advanced age of 13, deaf and unable to walk very far, when it's time for breakfast his obvious joy is unavoidable and quite contagious.  His "happy dance" as I prepare his food has slowed down a bit, but his enthusiasm never wanes.  This is a dog who loves to eat, and is sincerely thankful for each morsel.

It's a daily reminder to me to be thankful, as well.  How much more do I have to be grateful for than a bowl full of kibble?  A lot, I think.  

It's something Chris has told me he thinks about lately, too.  I wanted to share a link he sent me (and had me watch with him).  It brought me to tears as I could see the depth of thought Chris is presented with as he contemplates his present circumstances.  As he said to me, "this is truly how I feel now, mom - every day."

Take the time to view this video all the way through. It's about 10 minutes of your day, but it will surely cause you to pause and be grateful for the day you are inhabiting, no matter your circumstances.  I hope it blesses you as much as it has blessed me.

I love and appreciate all of you and thank you from the bottom of my heart for your desire to stand with us on this journey.

With a grateful heart,

 ~me~