Put 10 Neuro Docs In a Room & What Do You Get?

I can think of a lot of funny answers to that question, but I'm so ridiculously exhausted from barely sleeping all week that I can't even muster the energy to plop them out, but feel free to add any you can think of in the comments. Maybe I'll give a "prize" to the best one?

Yes, I know I'm stalling.

You have no idea how long it has taken for me to put this post together. I told my text list it would be Friday night. Started working on it Saturday night. (oops!) 

Worked a little bit on it.

Searched the Internet.

Uploaded pictures.

Pinned on pinterest (yes, I'm addicted).

Changed the background.

Typed a little bit.

Checked out Facebook.

Read other blogs.

Researched surgeries.

Found blogs of other kids that have had surgery.

Got inspired and typed some more.

Said screw it & went to bed...very late.

Anyway, my attention span stinks on a good day. The past week and a half, it has been extraordinarily bad. My sleep has been awful. Constantly thinking about what was going to come from the conference. Trying to send telepathic messages to C-Monkey's Dr. Neuro & Dr. Neurosurgeon. Trying to make them believe in my boy. Trying to lead their hearts to see the love we have for him. Our desire to rescue him.

Praying for them to have compassion for a little boy that loves his toys, loves to give hugs, loves to swing, loves to dance in his car seat in Mommy's car when we are listening to hip hop, loves doughnuts, and loves his Mommy & Daddy. For them to have the compassion to see the boy that we (& so many others) love with all of our heart, & not just see him as an image of a brain on the screen.

Prayed for them to have compassion for us...his parents. The parents that have given so much. Sacrificed so much. Grieving so much for "what should have been". Heartbroken that our only child will be 6 years old in April, and we've never heard him speak a word. Don't know what his little voice sounds like. Constantly guessing at what he needs, wants, feels. Angered when we hear parents at the store scream at their kids to "shut up!" Wondering why we've been given this hand at life.

Yet, at the same time thankful for the amazing people that have come into our because of 

C-monkey. I spent Thursday evening with some of those people. Some AMAZING Mommy friends. That night especially, I was so thankful to have them. So thankful that I have friends that get this journey. That don't think I'm an awful Mom when I say, "This really sucks". Friends that see past the "I'm fine" junk that I'm so good at pushing out because sometimes it is just easier than letting the real emotions out.

I had talked to Dr. Neuro on Thursday. Trying to really emphasize to him how desperate we were. How scared we are that he is going to get worse. I made my last Mommy plea to him to help us. Hoping it would carry through to the next day, into that room of 10. He told me they would be meeting at 8am, but it would probably be 11:30 before he could call me. At 8am on Friday as the team was assembling, I was putting C-monkey on the bus to school. Tears in my eyes as I hoped that the team that was deciding our future, would know that I would give my life for that boy.

The morning stretched on. I tried to do things to relax. I surfed the Internet while I drank my coffee. I played with Rudy. I watched TV. I tried to meditate (that was a hopeless cause). I tried to take a nap. I paid bills (not for relaxation, but b/c it needed to be done). I cleaned out my purse. I jumped out of my skin every time a phone rang or beeped. 11:30 rolled around...nothing. More time passed. I decided to give him until 12:30 before I would call (I'm nice like that..lol). 12:35 rolled around and I was dialing. Luckily his secretary likes me. She told me he had just walked in from meetings, but she would see if he could talk. She told me he would call me back in 10 minutes. Holy crap, the ANXIETY!

Dr. Neuro called, and said they had reviewed all of the studies and discussed the best course for C-monkey.

Based on all of the data that was presented, their decision was:

.

.

.

V

a corpus callosotomy

For a visual of the surgery click here.

Don't worry, it's not an actual surgery. I wouldn't do that to you. It's just a drawing.

I was relieved that it was something. Part of me was slightly disappointed though. I do not think this, at the end of the day is the "cure", but I understand why they made the decision that they did. I appreciate them wanting to be sure, and not haphazardly removing parts of his brain without 100% proof. The biggest hiccup in all of C-monkey's tests is the EEG. That booger will not cooperate. While everything is presenting right sided, the EEG isn't predominantly right sided. He has widespread seizure activity. They cannot say with any certainty that the laughing seizures are originating there. Their hope is by disconnecting the hemispheres, that we can at some point lateralize the seizures (hopefully to the right where the abnormality is). IF they do, then we can discuss further surgery.



We'll do anything we can to hear that sweet laugh again.

 My emotions have been all over the place since that call. Relief that we have a plan. Anxiety over it all coming together & scheduling our lives around it. Fear over making this decision. (How does one make this kind of HUGE decision & feel okay with it?) Sadness over it coming to this, and knowing that C-monkey has to go through it without us really being able to explain to him what is coming. Hope that this gives him a shot at a better life. The things that I do know: he has 2 parents that will be with him EVERY step of the way trying to make it better, and that people all over the country are praying for him. Dr. Neuro said he would start working on getting us in with Dr. Neurosurgeon for a pre-op appointment where we will discuss all of the nitty gritty details, and we will formally decide if this is the step we will take. If so, we will schedule a date for surgery. He made it sound like this could all happen fairly quickly, which could be good and bad. We will try to keep everyone in the loop as it all comes together.

Until that time, we just ask that you keep all of us in your prayers, happy thoughts, and send positive vibes & energy for peace for J & I & for C-monkey to realize that we are doing this to help him even though he might not understand.

As with everything, we are in this journey together...

^"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 

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.