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?