Our chance to slay the beast?

"Sometimes all you can do is

not think

not wonder

not imagine

not obsess.

Just breathe, and have faith that it will all work out for the best."

I found that the other day on Facebook, on one of the pages that I follow. It's strange how some days I will read or hear things that literally yank my attention. I feel like I've been walking around in such a fog lately that maybe that is the only way to get my attention.

It's almost like I need huge neon signs screaming for me to pay attention. When life gets SO OVERWHELMING & too much to deal with, I escape into this mental shell where it is just me fighting these huge life issues (& often fighting myself). I get the essentials of daily life done, but it's almost like I'm just shuffling along on autopilot going from point A to Point B. Just getting through the day.

I don't like making big decisions. Never have & never will. The hubby & i were planning a date night & 3 days later I still hadn't figured out what we were doing. Heck, I can barely get myself dressed every morning because I'm so indecisive.

The decision J & I are facing right now is most likely the biggest decision we will EVER make in our lives. It keeps me up at night. It follows me everywhere I go. It is a topic of conversation for everyone that already knows what we are facing. It puts butterflies in my stomach. It makes my hands shake & chest hurt from anxiety. It makes me cry at the slightest thing...every day.

What is that decision??

To answer that, we have to go back a couple of months. In a previous post I had mentioned how C-monkey was admitted to the hospital back in October for a video EEG to evaluate the new laughing seizures. We waited (very impatiently) for the Dr to meet with the whole Epilepsy team to discuss C monkey's case. When he finally called to discuss the results it was a whole 5 weeks later. Pissed would be an understatement at that point. He proceeded to tell me on the phone that Friday (as I'm heading into work, no less) that C monkey's seizures finally had a right sided focus (where the seizure is originating from one point instead of "all over"). He & the team recommended a PET scan and Ictal/Interictal SPECT scans to further evaluate what they were seeing. We found out the next week that C monkey would be admitted to the hospital around the middle of December for the SPECT scans, & we would go back on 12/29 for the PET.

December came, and we had all of the testing done during the craziness of Christmas, etc. The hospital stay was well, a hospital stay. We had a follow up appointment scheduled for January with Dr. Neuro. We hoped that all of the testing would be looked at and discussed and we would leave with a plan in place.

We forgot that C monkey is NOT a "rule follower". This is the kid that stumps most Doctors and throws the rule book in the air when it comes to clear cut answers. All of the imaging tests showed that he has a cortical dysplasia. We knew back in 2009 from a MRI & PET scan that he had this. The problem was, his seizures & EEG weren't consistent with where the dysplasia is located. So surgery was not an option. The current problem is that the tests do not all reflect the same location. (WTF is right)

Here is how C-monkey's dysplasia breaks down according to each test:
MRI (2009): right frontal
PET (2009, 2011): right frontal
SPECT (2011): right temporal
EEGs suggest widespread seizure activity, but predominantly right temporal
For those of you fortunate enough to not know the sections of the brain, here is a great
diagram of the brain to put it into perspective for you.

The image below is an example of what Cortical dysplasia looks like.  It is the little whitish blob in the upper left of the picture. This is very similar to C-monkey's. I wish I had the sense to take a pic of it with my phone when his Dr had it on the screen, but I didn't.

borrowed from blog, "Neuroradiology on the Net" & ACR

At least they are all showing up right sided, but the odds would be more in our favor if they were ALL either frontal or temporal. Dr. Neuro explained that this can happen because all of the tests look at things differently.

So, what is the big decision and how does all of this gibberish play into it? Right now, according to Dr. Neuro & the rest of the Epilepsy team our best treatment option is:

 brain surgery. 

That's right, to help our son hopefully live some kind of better life, we have to make the decision to let go of our precious little guy into the hands of a surgeon who will saw into his skull, and proceed to cut into his brain or cut out parts of his brain.

Kind of makes dinner decisions look rather minuscule, huh?

There are varying approaches we can take with it, and I rather post those once we have more solid information. We will be doing another MRI in about a week, & hopefully meet with the neurosurgeon after that.

It's been A LOT on J & I. This decision is weighing heavily on every aspect of us. We are scared about making this decision. So many what ifs. So many very scary what ifs. So many details to figure out. So many unknowns. I'm a planner. I don't do well with a lot of unknowns.

We feel we need to act quickly on this too. We feel like we are in a race with the seizure monster over control. Who is going to win? C monkey's seizures are getting worse. They are lasting longer. Coming on stronger. Harder to snap out of. Draining the daylights out of all of us.

The worst part of it all? They have stolen his real laughter.

We've noticed that this week, and it has been so heartbreaking. Those of you that have met him, you know what an adorable laugh he has. We've tried all of the usual gimmicks that always made him giggle uncontrollably.

Nothing.

Silence.

He isn't making any kind of sounds anymore. Only when the damn seizure monster attacks, & he laughs/cries with that. We have to find a way to trip that monster in this race.

To not let him win.

For us to win, we have to make the biggest & scariest decision of our lives.

Where are we now?

So where we left off on the old blog, Dr. Rockstar in Detroit said that C~Monkey wasn't a surgical candidate and prescribed Phenobarbital and sent us packing on our sad way. He told us that if his EEG pattern ever changed and if we ever saw a focus to his seizures to contact him. We soon saw C~monkey's regular Dr. neuro, and we agreed that was a good plan. Time went by & we reviewed what other meds we haven't tried, which aren't many, and prayed for the best. We never did go with anything new. What was the point? I knew in my heart that meds were never going to help him. We had already tried over 10, and the research shows that with each failed med you have less and less chances of finding one that works. So eventually we agreed that the best next option was a Vagus Nerve Stimulator. The neurosurgeon at the hospital that Dr. Neuro is at did the surgery the Wednesday before Thanksgiving 2010. We went home on Thanksgiving, thankful there was an option for once and praying that this would work for our sweet lil' guy. It is the most horrible feeling as a parent to feel helpless in ways to help your child live their best life.

The recovery period went great and we made frequent trips to see Dr. Neuro to adjust the settings on the VNS. We were seeing some benefit from it, and C~monkey's seizures seemed to be lowering in number and intensity. It is a complete pain in the tush to keep up with the magnets, and I think someone is eating them (the seizure monster maybe?), but atleast it was "something".

Then this past Summer, the seizure monster sensed we were getting too comfortable and maybe even too happy? We started noticing C~monkey have these strange episodes of hysterical laughter. Except they were happening when things weren't funny and completely out of the blue. This wasn't normal laughter either. We are talking scary, manic, demon possesed laughter. I knew it had to be a seizure. I had never heard of someone doing this before though? I was at the Dr. with my Mom, who was having her own scary health problems at the same time, and while waiting for the Dr to mosey on in I decided to Google "laughing seizures" on my phone. Well, this is what I found out: they are called "gelastic seizures". This is the exact article I found in the Dr's office that day. Sounds fun right? I wanted to cry right there. Something else. We never seem to catch a break. The seizure monster seems intent of ruining our lives.

We had an appointment with Dr. Neuro so we wanted to try and catch this pesky monster on video. We had to do this because to hear it described and to see it are two different things. We knew he always has them in the morning after waking. We knew that was our time. So I made sure the flip cam was ready and I sat and I waited. It took no time at all.

I've been hesitant to show this video to anyone. I can't really explain why. Maybe to keep people from knowing what was really going on? To avoid the pity? To keep it from sounding like it was this bad? Fear of admitting this was really happening? I don't know.... Only a handful of people have seen it. Over half of them have cried after seeing it. When I started this blog, I knew I was going to keep it real. None of this fake "we are fine." crap. I have to show this video. I have to put it out there to help other Moms and Dads that are desperate to save their kids. To put awareness out there. To explain why I'm a raging B!@#h some days because I start every. single. day. of my life like this. Some days I'm okay and can deal with it. Other days I want to punch random strangers in the throat because I want them to hurt  like we hurt deep in our hearts. Because I'm angry that innocent kids have to start their day like this. Because I'm sad that I can't take it away from him. So here, gleam whatever you may from this:

(ignore the hideous sofa cover, we thought we could stop him from stimming on the pattern on the sofa by putting that on there. it didn't help so we yanked it off)

Pretty crazy right?

Dr. Neuro seemed pretty amazed by it too. He was also stumped. He admitted C~monkey to the hospital a couple of weeks later for a video EEG to see if we finally had something we could do something about. Come to find...we may have.

Stay tuned for the next post where we will talk about what we've found out and where we go from here....