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