Wednesday, January 16, 2013

School... A Friendly Planet?

We are back at home, and after the worst stomach bug EVER, I think life is returning to normal.

Well, as normal as it can be, anyway.

Renn was beyond apprehensive to go back to school, yesterday. I've never seen him cry or hold on to the fence post outside his classroom, EVER. Are you kidding? Renn, the fearless wonder? He doesn't even understand what "Stranger Danger" means; Well, he does, but I don't think he believes in it. He cried, and begged for us to take him back to the car. However, when his teacher opened the door, Renn's smile returned.

To be honest, I think this new medication wiped him out (it's called Clobazam, by the way); that's one of the very few side effects it has.He came home and fell asleep face first into his homework, then woke up, walked around like he was completely intoxicated, and passed out on the couch. He slept until dinner.

Right before bed, he had a burst of energy that enabled me to talk to him. He and I have a secret code word that I put into place when he was diagnosed that he can use when he wants to be honest about his feelings. I tell him that if he needs to REALLY talk to me (in other words, he can't use this time to tell on his brother or ask for another cookie), he just has to say the codeword and we can go to a quiet place to talk. Last night, he all but screamed the word, and told me the reason he was afraid of going to school.

"I don't want people to make fun of me," Renn said, hiding his face.

My heart just blew apart, all over the room. I couldn't contain my own fears for him... Ones I'd not truly realized were even there. I guess it'd never crossed my mind that he could get made fun of. At least not seriously. He's in Kindergarten, for crying out loud! Would kids in his class even notice when he had a seizure? My own father can't even tell unless we point it out (and that's no offense in his direction... they're hard to notice!)!

I asked our little Jedi if his teacher said anything about how the class missed him, or if he had to explain where he'd been and why. He nodded his head, but didn't say much else.

So, what do I do in this situation? Obviously talking, talking, TALKING is the most important for our boy. I just want to know where he got the idea that people would make fun of him?? But other than that, Momma Bear wants to be there and stand in his defense 24/7. I realize that, especially for a boy, that's the WORST thing a momma could do. But holy crappoli... I didn't think this would be a thought on my mind, or most especially- HIS mind, this early in the game. If only I could have Mr. George Lucas give Renn a pep-talk!

There is so much I could say about bullying... About the way our world is dealing with it in all the many ways. But right now, that's not my focus. Renn is. Renn's fears are. I want to prepare Renn for a school life where he understands that those bullies and those kiddos who just don't understand his condition, ARE out there. I want to truly teach him that school can be a friendly planet. But I want to give him the tools he needs to deal with the emotions behind it all, waaaay before he ever faces such a situation.

Anyway, Dr. Amazing emailed me yesterday as well. We should be finding out the MEG results by the end of the week, so that's something to look forward to.

Sigh... More to come.

Friday, January 11, 2013

Jedi Master Training Mission: Last of the Training

This mission is... OVER!!!

We are headed to our home planet and we are sooo happy. We received a lot of information that I will share in moments, but please know how grateful we are for your love and prayers. My goodness... without them? This journey would have been far more difficult!

I'd like to introduce you to someone, by the way. This...

... is Dr. Amazing.

Renn had just had his electrodes taken off when she came in. She brought him a Ziplock bag full of Legos and several Star Wars Lego characters. She said, "My kids and I sat and went through all of their stuff last night, and they wanted you to have their favorites. I told you I'd bring you something from home!!"

Yesterday during his MEG, she sure did say that she'd bring him something from home. And here I was, thinking it was going to be a special snack or cookies that she'd made. But her own children gave to our Jedi from the bottom of their hearts? I told you... She's Dr. Amazing, and it sounds like she has equally amazing kids, too.

So, we have good news that is also very, very bad news. I guess it won't matter the order in which I tell you, right?

Well, it's looking like this little mummy (yes, this is his Mummy Face!) is not most likely NOT going to be having surgery! I know, I was thrilled too. I got shaky, and started praising God in my head. I was picturing him playing with the full-blown soccer league this summer, and voting myself as team mom.

But (Lord, how I'm beginning to hate that word), the reason he probably won't have surgery is because he is inoperable. You see, we were here to determine if we could find the single, pin-point location of where his seizures stemmed from. We were pretty sure his seizures were Focal, on the right Frontal area of his brain. However, what she's about 90% sure of is, his seizures are Generalized... meaning, they're everywhere... meaning... they'll never stop.

So, with the oddest mix of emotions around, we are ready to process what this means, and continue to move forward. What's next? We're starting him on a new medication (I'm trying to remember the name right now, but I'm a bit overwhelmed at the moment- my apologies), and if that doesn't do the trick, we'll do a PET scan, and then these terrible diets that I never knew was an option (because we thought his seizures were focal).
For now, we go home. I will be updating this blog constantly. I will be doing interviews with other families dealing with different types of Epilepsy, so we can educate ourselves on this condition. It seems to be here to stay, for our little, and oh-so-FREAKING-brave Jedi. So, we're going to make the best of it, and pray that we will find the medication that keeps him seizure free.

We have about an hour 'til we hit the road... Renn took a nice, loooong shower, and is enjoying having the freedom of his head back. Thank you, everyone. You are such giant blessings in his life. :)

Renn says: "Thank you for loving me. Can you pray for me? I am happy that you love me and that you take care of me. I can't wait to play with you. Thank you."

And with that, let's go home.

Thursday, January 10, 2013

Jedi Master Training Mission: Day 4

I'm just going to come right out and say it.


Here's the thing about hospitals- there is far too much information going around through the ranks that by the time word gets around to the patient, it's not even close to what's really happening. Ever play a solid game of Telephone?? Now, imagine playing Telephone with 44 people. Imagine them all sitting in one ginormous circle, waiting eagerly for the doctor to tell person numero uno precisely what the plans are for patient in room L-616. The doctor leans down, whispers the instructions, and walks away. So begins the game. The only rule? No one may get up to tell the patient anything until at least five people ahead of them have heard the whispered instructions. One by one the information spreads, until all 44 people have heard it, and have individually made their way to that poor, unsuspecting patient.

That's what today was like. With every new person who walked into Renn's room, their version of the story was slightly different. First, we were going home tomorrow. We'd monitor his VEEG one more night, and that'd be it. Then, we were told that he WAS, finally, going to have the MEG done, and it was going to be done ASAP (this was at noon), and that we were going to take his EEG electrodes off, put the MEG electrodes on, and that once the test was over, he'd be sleeping without ANYTHING on his head (meaning we might get to walk to the cafeteria together for a dinner date), and we could go home in the morning! Two and a half hours later, the tech came in, switched the electrodes, and we had twelve people in our room all of a sudden saying different things. We went to the MEG, and came back to find that not only did the electrodes have to stay on, but that they weren't sure we were going home any time soon.

The MEG was hard. Very, very hard. He had to lie there, very still, just like an MRI, only this machine was only covering the top portion of his head. For almost two hours. Both he and I had to be sealed shut in that tiny space. Before we left our room, I was told to remove all metal. So I did, because there was no way I wasn't going to be with him. However, once we were in the room, I actually even had to remove my bra... Intense, no? Renn had a very hard time holding still, as you can imagine. Even Dr. Amazing came in (foregoing her glasses, bra, everything! as well).

She really is Dr. Amazing.

Long story short, folks, it's looking like Renn is having multiple seizures at night, too. Like maybe 10+. This could be far more serious than we'd thought. If the EEGs and MEG cannot find the specific location of where these dang things are coming from, drastic measures will be taken. I will stay here with him as long as it takes... I'm not bringing him home without an answer.

 He's so brave, you guys. I know he's holding all his emotions in, and is standing strong for his mommy. He doesn't often admit when he's afraid. He's always done that. Just like a Jedi. Whenever I've been out of sorts, I've always seen this face grinning in my direction...

He's sleeping quite soundly, as he had yet another seizure right before bed that seems to have knocked the tuna salad out of him. This one was the most different I've ever seen; no jerking, no questions, very little pointing... But his entire body tensed up and he'd grunt as though he were in pain. I hope Dr. Amazing sees a difference, too. The hubs was Skyping with us at the time, and he couldn't believe how different it was.

All throughout the day, I had this song stuck in my head... So, I'll leave it with you. Once again, thank you for your love, support, and prayers. I want this monster gone, too... for my beautiful boy.

Wednesday, January 9, 2013

Jedi Master Training Mission: Day 3

It's truly amazing what TWELVE HOURS of sleep will do for an almost 6 year-old!

Today, we were quite busy. Dr. Amazing came in pretty early to discuss the (what they call) "event" that Renn had last night. She was happy with it! A student of hers had already told me that she thought we could go home today or tomorrow. And honestly, I was pissed. Both the hubs and I are the kids of people that like to work hard and get EVERYTHING done, before we play. And with Renn being in the hospital ALREADY, why not stay here and get all the tests done at once??

Well, Dr. Amazing agrees. And since we just took him off his medication last night, why not wait around to see how badly his seizures can get WHILE WE'RE HERE?? So, the earliest we'll leave is Friday, she thinks. But that all depends on if the EEG results are clear enough to see where his seizures are coming from. If they aren't, we'll hopefully stay for further testing/imaging. I don't want him to have to come back.

Throughout the morning, we got to Skype with another amazing friend, he got some work done with the help of a teacher's aid, and he got to visit the playroom again!! And I got to take a SHOWER!!! (Yes, it is the little things, thank you very much!). He was just in the best spirits. It was incredible to see.

At lunch, a knock on the door lead to a very cool visitor!

Officer Brian, of the SFPD, came by to play a fun game with Renn and hang out for a bit. Being a big Star Wars fan himself, the pair hit it off quite well.

They played a mean game of, "Who Will Smile First", and Renn told him all about how he was going to be a Jedi Police Officer, one day...

... and told Officer Brian to put his hands where he could see them.

Renn was so joyful, so happy. It was absolutely wonderful.

He had a pretty significant seizure around dinner time, that left me undone. It didn't last very long (about 2-4 mins), but he shook far more violently than before. I think I got a preview of what not having Lamictal is going to look like. Deep down, in my most secret place, I thought it was possible that I was mistaken back in February of last year, and that he really hadn't had a seizure after all. And I thought that maybe, just maybe, all this medication we were forcing on him was actually causing the seizures. After tonight, that last ray of hope was blocked from view, forever. Now, I think the hubs and I are on fire, and will stop at nothing until Renn is okay.

It broke my heart today to watch that Officer hear Renn say what he wanted to be when he grew up. I saw it in his eyes the moment he realized he was talking to a kid who's chances of actually joining the force were slim to none. This Officer was somewhat of a newbie... It was probably the first time he'd experienced such a hopeful, yet soul crushing, conversation. I am very grateful he kept a smile on his face, and talked about being Renn's very old Captain, one day.

Renn and I just played for the rest of the night. We played Trouble, and broke out some PlayDough, and he created this really cool green arch.

The night was not complete without a little moustache competition, though.

He is once again sleeping, on this Wednesday evening. I saw clouds from our 6th floor window as the sun was beginning to set, and it looked like rain. I love the rain, and I always see it as a good luck thing; never anything to be dreary over. We have three seizures captured on camera, a great team of doctors, nurses, specialists, tutors, and friends in this hospital, a daddy and a brother waiting eagerly at home, and...

...each other. We're all going to get to the bottom of this.
Goodnight, y'all.

Tuesday, January 8, 2013

Jedi Master Training Mission: Day 2

You know how after intense exercise training you are always the most sore the NEXT day?

Welcome to day two...

After a night/morning like last night/morning, I'm shocked either one of us were functional, today. He fell asleep at 9:00PM, and I was grateful. However, at 2:50 this morning, I woke to the voice of a somewhat panicked nurse saying, "Hey buddy, you can't get out of bed... Do you have to go to the bathroom?" I jolted from my plastic chair "bed", as the nurse apologized to me saying that the Techs upstairs ("Big Brother", so to speak) had called saying that Renn was out of bed, and was out of view. From that point on, our sweet Jedi was inconsolable.

Now, when I say that Renn has always been pretty amazing in social situations, new environments, and around all types of strangers, I'm really watering it down. He is the MOST social, lovable, accepting child, who has never once thrown a full blown tantrum... in public. So when I say Renn threw a tantrum last night, what I really mean is he had an uncategorical, hyperventilating, complete panic attack-type, melt down.

He screamed, he begged, he pleaded, he cried, he sobbed; there was just no helping my Jedi. When we called Daddy to have him sing, Renn dozed off for about three minutes, and then started again.

Finally at 4:45AM, I hit the nurse button, and an angel walked through our door. She brought out her phone, and let Renn scroll through the hundreds of cat and dog pictures she had. Then, she found a peaceful fishy game to help soothe him. She even left her phone with us for the next thirty minutes.

But, it didn't work, and Renn got angrier. I held back tears of my own as I restrained him, trying to keep him from harm. Eventually, at 6:15AM, he passed out.

Throughout the day, he just seemed closed off and angry. Dr. Amazing visited, and said she was cutting out Renn's Lamictal... cold turkey. (I'm not going to lie, I'm scared about what that might mean for him.)

He did get to vist the playroom, though!! That was lovely. It gave me a chance to go outside and breathe fresh air, pick up some greasy Panda Express, and think. It helped him the most, though.

As the hours went on, I realized that Renn's face was a little more red, and his ears were a little more plump than usual. As I felt his head dressing, I discovered that the tape they'd used was just TOO DARN TIGHT! No wonder he was going nuts! I would be too!!Immediately, I started asking for someone from the tech team could come and fix it. Renn wasn't happy at first, because he was tired of people touching his head. But then...


It was like night and day; Color returned to Renn's face, and so did his smile. Instantly he wanted to play, laugh, make jokes! It was soooo good to have my boy back.

Later that evening, we got to Skype with two of our favorite families ever, and Daddy and E, too. He ate pizza, and life was grand.

After I brushed his teeth and got him back into bed, we had seizure #2 jump into the mix!! I know... Could this day have turned around any more?! Seizure #2 was pretty long... Roughly eight minutes or so. I can't believe he only had one all day, but I'm not complaining. Due to last night's debackle, tonight is technically his "first night", so hopefully he'll cooperate.

Sigh... I'm going to shout it loud and proud-

I have one strong boy!! And man oh man, am I ever overjoyed that God chose me to be his momma. He is going to grow up and be able to handle ANYTHING. I couldn't ask for aa single thing more.

See you folks tomorrow.

Monday, January 7, 2013

Jedi Master Training Mission: Day 1

We have arrived at UCSF, and Renn is quickly winning over the staff on the ENTIRE 6-Long floor!

As soon as we got here, he surrounded himself with the oodles of Star Wars trinkets that loved ones have both bestowed on AND made for him, and he sat quite comfortably while he playing various games.

But eventually, the hard work had to begin...

He took to it like a true Jedi warrior, I tell ya. He breezed through getting the electrodes put onto his head, and knew the whole process by heart. He only got irritated when he had to close his eyes for part of it (probably because it meant he was going to "mess up" his game!).

After we signed our lives away and began to get comfortable, Renn had a seizure... Hallelujah!! It wasn't huge, but we caught it, baby! And I'm not going to lie... I did a happy dance.

Finally, it was time for Daddy and E to leave... That part wasn't fun.

After a while, we had sooooo many people come in and ask all the same questions (this is a research hospital, after all! I met quite a few medical students, residents, etc. I just pretended I was on an episode of Scrubs!), but when we finally saw Dr. Amazing, she informed me that she has no serious plans for Renn at the moment.

Wait, WHAT?

 I was kind of confused. But what she meant was that she really wanted to capture some serious seizure activity to base her opinions on, before deciding how long we'd stay. I got the feeling that we won't be here longer than a week (yaaay!!). And, while that's a great thing, I think that means that we won't be getting the one-stop-shop testing done as we'd hoped for. Living so far away, we'd prefer to get it all done at once.

Then, as we turned down the lights for bed...

 Renn. Broke. Down.

He began to beg, to plead, and to sob, "I just want these off my head! Why are you doing this to me?? Stop torturing me! I hate this, Mommy! I hate it, I hate it! I want to go home!!!"

Mommy wanted to grab him and run.

I know he's not angry at me, really. I know better than to take it personally. But, put yourself in my shoes, and tell me your heart doesn't ache.

I think I'm now okay with not having a one-stop-shop testing situation on our hands. I can't even hold him, as he lies in that hospital bed. That camera is just as fixated on him as I am, and as he sleeps peacefully, I am praying. Constantly praying. And I am forever grateful for the verse God gave me on Sunday...

"It is not for you to know times or seasons that the Father has fixed by His own authority..."
Acts 1:7
Day one of this mission is now behind us. May day two bring the biggest and best answers imaginable.
Sweet dreams, Jedi...

Friday, January 4, 2013

Always in Motion is the Future

Happy New Year!

I hope you are enjoying 2013, already!! New Year's Eve came and went in our household, lacking just about everything, save promise. The hubs and I cried and celebrated as we said goodbye to one of the hardest years we've endured yet. We're holding our heads high, and putting a lot of hope into the old superstition "Lucky 13".

We are busy getting ready for our stay at UCSF, and, man! That's proving to be a bit more difficult than we'd thought. How do you pack or plan for a trip where you could be gone as little as a week, or as long as a month?! Underwear... Lots and lots of underwear (I assume!).

The hubs and E will be dropping Renn and me off bright and early, Monday morning. After that,  the Jedi and I will be on our own. We're calling it the "Ultimate Renn and Mommy Date" (though I think I'd rather take my kiddo camping). It's going to be rough without any visitors, this time; HOWEVER, we've had some great people set up Skype dates with us, give us things to do to be entertained, and made promises to call. A friend from school even stopped by our house the other day to deliver this...

Sweet, right? Totally made his day, and he's been sleeping with it ever since. Renn says that he'll sleep better this time around because he has this awesome blanket!

We might not know what the future holds for Renn, but thankfully none of us ever know what the future holds. Jesus does, though. And that's why we're grasping on to Jeremiah 29:11! For now, we know we'll be packing an undetermined amount of undies, our toothbrushes, the laptop, and the extra special gifts that he's been given, and we're heading up North. And when we come back, we'll be that much closer to knowing what is next for out little Jedi.

Stay tuned... Our adventure awaits!