We have a date!

Hopefully the seizure monster has received his eviction notice?

I was on my way out of town for a meeting last Monday when I got a call from Dr. Neurosurgeon's nurse. 

It was early.

I was flying down the interstate.

Coffee not fully kicked in.

Stressed to the max.

I knew I would probably be getting a call that day, but I just didn't think it would be that morning for some reason. So when I saw the number pop up on my phone, my anxiety popped through the ceiling like one of those carnival strength games that you hit with a big sledgehammer. The nurse and I discussed the schedule and what was available for when both Doctors were available.

We decided that the next best date would be on April 12th. That gave us a little more than a month away to get everything squared away. As of today, it is now a month. Yikes!

We have an appointment next week to meet with Dr. Neurosurgeon & to do all of the pre-op stuff. We will head to the hospital on April 11th for a pre-op MRI (grumble, groan) & we will then head back over the next day for surgery.

Lots to do between now & then! In the meantime, we have to mentally "process" all of this and exactly how we do that....we're not too terribly sure.  One day at a time is all I can think of. For now we cherish the time, steal a few extra hugs and kisses, make every moment count, and pray that it all works out for the best.

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 

Overtime with the Seizure Monster



I found this lovely gem of encouragement the night before our appointment with Dr. Neurosurgeon. Those of you that know me the best, KNOW this slapped me right in the face. I was so thankful to have read it, and to read it again tonight for reassurance.

 

Tuesday (2/21) we were scheduled to meet with Dr. Neurosurgeon at 12:30. We got there a little early as we usually do since we commute over an hour to get there, and we never really know what the traffic will be like. We checked in and found out the wait was going to be about an hour and a half. Uggghhhh, just what people with major anxiety enjoy doing most...waiting.

We killed the time by feeding C-Monkey some lunch, playing on our cell phones, C-monkey played with his toys, people watching, and me surfing around on my "happy place" ~Pinterest.



LOL! Those of you on Pinterest know this is true!



We FINALLY got back in the room, and waited some MORE!! Why didn't we pack a picnic and sleeping bags? We finally saw Dr. Neurosurgeon at 3:00. We were so anxious to hear what he had to say that we didn't flip out over the wait.

Once he opened his mouth, I knew we weren't leaving there with what I thought we would be...a solid plan. Long story short, they really did not get any concrete evidence on Monday's MRI that swayed their thinking and compelled them to commit to surgery. I scanned in a couple of the images from the MRI, and I see the dysplasia. I don't know if it is just because I know what we are looking for. I'm going to do a little experiment and see if other people that DON'T know what they are looking for notice it. I will post the unmarked pics below, and the marked pics at the very end of the post. Let me know if you were able to see the area or not.



Do you see what I see???



Where's seizure monster??

  

They had already planned on presenting him in conference which was supposed to be tomorrow, but the chief of Pediatric Neurology, who has oodles of experience, is out of the country, and I could sense Dr. Neurosurgeon really did not want to conference without him. Me being the modern smart ass that I am asked, "Well, can't you just skype him in?" Duh?? Not likely that will happen so they will conference next Friday instead, & the 10 Doctors on the team (peds & adults) will really scour ALL of the information that they have. So fingers crossed we will hear something next Friday! Actually Dr. Neurosurgeon guaranteed us we will!

We got some "what if" scenarios from the surgeon so that was eye opening. He personally does not feel like a corpus callosotomy would be the most benefit to C-monkey. He believes our next best step, if the team agrees to move forward, would be to place subdural electrode strips on C-monkey's brain via 4 burr holes in his skull. He said he would be in the hospital connected to those for maybe a week. Our hope would be to get the most precise information on whether or not we are battling the right temporal or right frontal sections. We would then decide what surgical course would be the most appropriate. We were disappointed to say the least that once again, things are not clear cut. I'm just trying to think of it as we are in overtime in our match against the seizure monster.

The one great thing from today's appointment, was that I think Dr. Neurosurgeon really got a glimpse of how urgent it is that we do not drag our heels in this.

We have to make decisions.

We have to make the best decisions for C-monkey.

To pull him out of the grips of the seizure monster...but we have to do it quickly!

So we re-energize and prepare to keep fighting the greatest fight of our lives.

We just want to be in the last seconds of the match with our feet pinning the seizure monster to the ground when the buzzer sounds. It is just going to take a little longer than expected.

"Everything always works out somehow. It just does. Be at peace..."

Did you guess right?

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....

Where have we been?

C~monkey then

It's been almost 2 years of a blogging break. The break lasted longer than I had intended.

Why did I stop blogging? I liked doing it for the most part. It was a great way to keep track of what all we had been through. To keep up with all of C~monkey's journey, because my overstressed Mommy brain doesn't have much memory.

It was cathartic...at times.

I liked the fellowship of meeting other families that were going through the same seizure hell that we were dealing with. I felt like they "got it".

Towards the end, it was just one more thing to do.

I had gone back to work. I was busy. Too busy for blogging I thought. Facebook was so much easier. If you weren't on FB...sorry about your luck.

I had concerns over privacy since our previous blog (that I hope to edit at some point & post along with this one) had our names smeared all over it. I felt like people knew too much.

I felt like I wasn't really being authentic. I felt like I had to put on this happy show of what our family was like everyday like it was all rainbows, unicorns, and daisies. I felt like if I said anything negative about being the Mom of a child with Special needs, that people thought I was a horrible person. Granted some of this *might* be true, but more than likely it was all my imagination. Blogging became more stressful because I felt the need to censor my words. Writing has always been the place that I felt I was truly able to communicate freely. If I have something serious to discuss, I would always prefer to write a letter instead of talking it out. My thoughts just feel more "free" that way. Is anyone else like that? So, when I began feeling stifled in my writing the cathartic feeling was gone. I've ALWAYS been a people pleaser, and let me tell you...being a Mom of a kid with SN and being a people pleaser is like standing in a lake of gasoline while holding sticks of dynamite...an explosion waiting to happen. So, I figured if all I'm being is a disappointment (once again, probably 98% imagined) then what is the point? I forgot the point in all of this was to put our story out there, to help other families in this journey, for me to have an outlet for my emotions...good & bad.

All of these are good enough excuses right? Well, since we are being honest, they might account for 30% of why I quit. So what is the other 70%???

I was angry, depressed, and pissed off at the world. A few months before I quit blogging, we took what was supposed to be our "miracle trip to Detroit". Where I thought an amazing Dr. Neuro (he is amazing, don't get me wrong!) was going to come into the room with his magic wand and CURE my kid of seizures that had stolen every dream & every hope that we ever held for our only child, and filled it with nightmares, stress, and tears. Yep, I know, I was setting myself up for HUGE disappointment. We left Detroit sad and downtrodden. Our miracle wasn't found in Motown. I felt absolutely sick (& it wasn't the disgusting Opa cheese we had in Greek town either). I felt like I had let C~monkey down. I felt like I had let everyone that had given us money, cheered for us, prayed for us, etc. down. I was angry that we never seemed to catch a break. I was angry that seizures had come into our house one evening, and robbed us. Robbed C-monkey. And there wasn't one damn thing I could do about it. I was selfish. I couldn't help but feel jealous of anyone that was achieving seizure freedom or even seizure vacations for their kids. I felt like an absolute failure of a mother. So, I had to get away from it all. Get away from drowning myself in the seizure world. Looking back now, this is where I began to slip down hill, faster and faster. I was losing my child, but I was losing myself too. It has been a long 2 years. One that I really wouldn't wish on my worst enemy. I look forward to reconnecting with other families. I look forward to having this outlet again...uncensored. I look forward to sharing the really cool things that C-monkey is doing. I also look forward to having this as a central spot that everyone that loves him can check in, instead of a FB post AND emailing people that aren't on FB, because that is a major pain in the butt! LOL! Next post we'll talk a little more about how C~monkey is doing today.

C~monkey now