"Thank you" seems so small

As we prepare for C-Monkey's surgery tomorrow, I knew I had to take this time as we are riding down the road to express some serious gratitude. We knew people cared for C and for us, but never to the extent we have realized over the past few days.

J & I have always been the types to decline any sort of help. It's just who we are. We've always been of the mind-set that someone out there needs it more. So when friends, co-workers, acquaintances, etc asked us to let them know what we needed or how they could help, we always say, "thank you, but we have it all under control." It has only been recently that we have realized people are not doing this out of pity, but they WANT to help! They want to take a load off of us. We are going through life changing, heavy stuff here. No one can tackle that for us, so they want to do SOMETHING to ease the burden. We have had to drop pride to the side, & just be thankful that we so many people cheering on, praying for, and supporting our family!

Over the past week, people have sent cards, added us to prayer lists at church, given us money & gas cards, started meal lists for once we get home, brought us food, given us hugs, and checked in non-stop to see what they can help with. For all of this we are humbled and blown away. "Thank you" just seems so small. Not nearly appreciative enough. Just know that EVERY gesture is appreciated, and we can never, ever thank you all enough! Our cups truly runneth over.

Our Pre-op Meeting with Dr. Neurosurg

Well, it seems to be a running fact that it takes me a week to process things before I can post them on here! Either that or I'm just a lazy slug.

We met with Dr. Neurosurg last Wednesday for an epic appointment. Epic in how long we were there. Holy cow, we should have packed a picnic because we were there for over 3 hours! We had an appointment with the surgeon at 9:15, and we waited an hour to see him. (Meanwhile, I amused J with all of my hilarious Pinterest jokes, the 3 of us had a Goldfish picnic, I may have snooped through medical supplies, etc.).

Dr. Neurosurg came in and must have known he was going to be bombarded with a notebook of questions. Yes, I had one.

He said they had spent  over an hour during their conference discussing C-Monkey's case. They actually spent so long on him that they didn't get to discuss the other kid that was on the schedule for that day. Oops! He said that Dr. Neuro really fought hard for C. They just could not justify doing anything more extensive than the Corpus Callosotomy (CC) as it was too much of a risk...at this time. His seizures are just too over the place for us to safely remove any particular area. It's not like we can go, "Oh crap that wasn't it, let's hot glue that piece back in!". He stated several times that they all agreed we needed to act quickly once this surgery was done. Their goal/hopes is to have the CC performed, give C time to heal (a couple of months?), and then do another EEG.

Their hope is that one will finally show a definitive focus. Preferably that right sided area. We'll kick THAT monster's ass when we get there.

The nitty gritty of surgery week (I feel like it should have dramatic music & graphics like Shark Week):

We will have another MRI the day before surgery (our insurance company probably hates us at this point with all of the expensive procedures we've had done recently). We will find out our surgery time at some point that day.

He said the surgery (on 4/12) should take about 4 hours. They will do a complete disconnection instead of just the front 2/3. The incision will go across his scalp (think ear to ear, but not quite that long). C will go directly from the OR to the PICU.One of us will be able to spend the night in the PICU with him. Thank God! If he is doing well, he will be transferred to a regular bed the next day. He will get up & moving and start therapy probably the day after surgery.

We will hopefully come home a few days later, as long as he is meeting the standard discharge protocol....pee, drink, pain control, vitals stable. He will not be able to go to school for several weeks due to risk of him falling and hitting his head. He cannot wear a helmet due to it pulling on the incision. Several of our school team members are nervous to walk with him without a helmet on a good day, so him going without a helmet isn't really an option.

I also need him here with me. I need to be able to challenge this new brain of his, one on one. I need to prove that he CAN learn. He needs me to advocate for him. Prove that he needs people to believe in him, and not give up when his goals aren't met. I need to find the BEST way to work with him...to prove it is possible. Anyway, sorry for the field trip on Tangent Blvd. I just felt the need to mentally "dump" that.

Back to our previously scheduled journey....The funny part of our visit was I asked the surgeon whether he was right or left handed and he said "both" (impressive) & I then made him hold his hands out to check for any crazy shaking. He was still as glass. I told him he passed the test. Yes, I'm THAT neurotic, and I own it. I'm not sending Shaky McShakerson digging into my kid's precious brain tissue! His RN had told us earlier in the visit about them visiting our town a few night's before for a Bruce Springsteen concert. I also gave him orders that there is to be no loud concerts the night before! Mommy's orders. LOL!

We then met with the anesthesia team, the child life specialist (who talked so much that I zoned out until she sounded like Charlie Brown's teacher & J focused on how much she talked with her hands....lady this ain't our first time in the hospital for christ's sake!), and then he had labs drawn. We also found out that one of us can walk with him to the OR & stay with him until he goes to sleep. We didn't get offered that option for the VNS. I figured it might be a battle, but J knew he wasn't going to win it, so he has already conceded to letting me go back with C. I knew I married a smart man. He'll be standing at the exit with my box of Kleenex.

I've been on several shopping expeditions since our visit, and I've gotten several comfort items for the hospital stay trying to make it as pleasant as possible for C. My Mom is also making him some big comfy blankets in bright colors/prints to make the room a little happier. I got him a stuffed lamb pillow that has lavender in it that he can lay on, and a little lamb that is like the pillow and plays ocean and other water/nature sounds to help him sleep, some Johnson's lavender lotion, and some comfy new PJs. (If anyone has any other suggestions, please let me know!)

It will be a stressful two weeks leading up to the 12th, but I think we have finally realized that this is our only option.

We have tried all that we can.

We just have to let it be out of our control at this point.

What I do know is: this boy is getting the stuffing hugged out of him over the next two weeks (even more than usual), and his cheeks might be chafed from all of the extra kisses. 

We are so thankful for the outpouring of love, care, and generosity we are receiving. You never truly realize how much people care.  I may not ever be able to thank you all enough, but please know we are so incredibly grateful to those of you that have supported us through all of this! xoxoxo~M

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