Dear Epilepsy

Dear Epilepsy,

I'm writing to you because you won't answer or return my calls, and you clearly won't open the door when I pound on it at 2am. I think you know why I'm trying to get a hold of you, and I think you're ignoring me on purpose.

Listen, Epilepsy...things have to change.  You have this knack for causing too much pain, fear, and anguish. There are too many men, women, and children all around this planet who deal with your garbage every single day, so it has to stop. Aren't you tired of people fighting you? Doesn't it irk you to know how many thousands of people HATE you? Maybe you enjoy the power you feel you hold over all of us, but I can promise you that reign of power is coming to an end.

For me, personally, I stayed awake all night last night, staring at the ceiling, coming up with new ways on how to defeat you. The grip you had around my son took a heavy blow, nearly 20 months ago. We were never quick to call his sudden success a full-blown victory (we're optimists, not idiots). We've always kept our eye on you. But last night, you decided to cause panic in my son. He did something he's never been able to do, though: he knew you were coming. Normally, I'd say that's a huge win over your devious ways. But, you see, you also caused him to fear... for his mother's sake.

"Renn, are you okay?"

"I'm fine, Mom." he said, looking in the complete opposite direction.

"No, really, what's going on? Why are you hiding from me?"

"Because I don't want you to be sad. And I don't want to go back to the hospital..."

You caused his seizures to officially return, Epilepsy. But what's worse? You caused him to carry the burden of worrying about how I would react. How DARE you.

I think you are deplorable. I think you are evil, you are unfair, you are nothing but the filth that clouds my faith in the darkest of times. My God is bigger than you. And after I'm done with this letter, I will remember that again.

You see, Epilepsy, our kids are stronger than you. You may never release your hold over them, but you will NOT TRIUMPH over them, or the way they've touched our lives. Sure, a few of our loved ones may have succumbed to the torment you riddled their bodies with, but that did not stop them from showing the world what their strength could do. Their bravery, even to the very end, only served as a beacon of hope for the rest of us who will not give up this fight.

We fight for them. We fight for all of them.

So, Epilepsy, I can say with utmost certainty that it's time we all break up with you. And believe me, it's not us, it's you. No, there's no cure against you...yet. Yes, there are thousands of people all over the place who believe the rumors about how surgeries are the total answer to the end of you and what you do, or that CBD oil is a one-size-fits-all solution. But, for every 1 in 26 who battles you every day? They know your game. And it's over.

Leave my son in peace. He's been through enough already. The seizure last night and the one this morning will not deter us from celebrating the days he doesn't have one. You may be trying to trick us by making them look different. We see your evilness attempting to break his beautiful spirit. But I assure you, your attempts will be made in vain. He is a Jedi... and he will not allow you to defeat him.

Leave our children, husbands, wives, fathers, mothers, brothers, sisters, grandfathers, grandmothers, uncles, aunts, cousins, neighbors, teachers, soldiers, EVERYONE alone.

This is it, Epilepsy. We're done. We're ALL done. Go back to wherever it was you came from and live a sad and completely lonely life.

Sincerely,

Jedi Renn's mom, father, and brother

And the Mothers of Natalie, Melanie, Kirsten, Aja, Kate, Collin, Eli, Noah, Kayla, Claire, Brian, Christopher, Amelia, Matt, Aiden, Skylar, and Alexis

***************** UPDATE ***********************

It turns out, that Renn was experiencing extreme dehydration, and did NOT actually have two seizures. It is well known that dehydration can be a big trigger for those who have Epilepsy, but it can also cause those WITHOUT Epilepsy to have a seizure. So, we are grateful, though on high alert, always. Thank you for your loving prayers!

2 Years and 100% Honesty Later

I've heard it said that often times when you go through a hard, gut-wrenching moment, you go into shock. As typical as that is, what I wasn't aware of is how long it might take for that shock to wear off.

For me, it's taken two years.

Since October 28th, I have cried every day. Every. Single. Day. I have experienced the emotions I wouldn't dare allow myself to feel, two years ago. I have caught myself staring off into the distance, sick to my stomach with the memories that are clearly haunting me. It's been downright painful to endure Facebook's usually oh-so-awesome "On This Day" posts that it shares with you (you know, the posts you've made in years past). But why? Why now, of all times?

I've watched our Jedi do things that I couldn't have fathomed him doing at this point in his life. He's active. He's making new friends in his new school. He's excelling in Language Arts at such a fast speed, he seriously wants to compete in Spelling Bee events. But best of all, he's HAPPY.

So, why can't I be?

~ November 6, 2013 ~

Two years ago today, Renn had his resection. That evening, I wrote this post after one of the most difficult days/weeks/months of my life. Remember that my mother had unexpectedly passed away just a few months prior to these surgeries. I look back, and I have no idea how I functioned. 2013 was hard.







Now we sit in our beautiful, mountain fixer-upper home. Our Jedi is a third grader at an incredible school. Easy E is a first grader, at the top of his class (wow... E is the exact same age as Renn was when all of this went down. That makes no sense to me). But they have adjusted well. and I can't thank God more for allowing that to be the case.

Renn hasn't had a seizure in nearly 20 months. However, over the course of the last week, we've noticed some very familiar behaviors starting to resurface. Is that a sort of PTSD that I have that's causing me to see things? Maybe. But the Hubs is seeing them too. So, we are making a plan of attack, to see if we can't prevent something from occurring. Folks, it can't come back. He's worked too hard. He has too many insecurities that he battles now, because of his age and knowing what he knows. If the seizures come back... I just... I can't.

Renn hummed a little Happy Birthday to his "new" brain as he was putting on his backpack this morning, and once again, tears fell from my eyes. I have so much to be thankful for. I have so much to celebrate today (and believe me, when I pick those boys up from school, we are sooooo going to party-- and better than Ross and Chandler ever did with Gandalf on FRIENDS. ;) ). But if I'm going to be truthful, I'm not sure I'm able to feel the same sense of gratitude that most would assume I'd feel. Maybe I'm jetting through the stages of grief at a bizarre, fast pace, because these days I'm pretty angry at the moments that Epilepsy has taken from our family. I'm angry when I see another one of my Epilepsy Mommas (the FB group I run) announce that their kiddo couldn't attend another school function because a seizure has caused them to sleep through it. I'm angry that I'm making typical 6 year-old memories with my youngest son that I still can't have with my oldest. E can color, write, comprehend. Renn still struggles. E makes friends everywhere he goes, Renn tries with all his might, but it's SUCH a chore. It's getting more and more difficult to ignore that Epilepsy robbed us. And I'm furious and broken about it.

The fact is, two years after I celebrated that my son remembered me after 50% of his right temporal lobe was removed, I'm angry that we ever had to do it in the first place. Yes, there were lessons to be learned, new families to bond with, and faith to be tested. But I hate that it had to happen the way it did. You, our dear friends and family, stepped up and carried us when we had no more strength. You showed us time and time again how God shows up in the most desperate of times. And in these moments, I remember all of that. I firmly grasp onto how God lead us where we are now, and how He kept us strong...and kept Renn with us. I am grateful... but it hurts now more than ever.



I hope that in the last two years you have thought of Renn; That you still hold on to specific things he has taught you. I hope that one day I will really be able to see Renn's story the way you all might see it. For now, I am going to make cupcakes and put on a happy face for that Jedi and his amazing brother. Because no matter how angry I am that our family battled what we did, I can clearly see through those boys' faces that it was worth it. And if we don't make it to 20 months seizure free, 19.5 was far better than nothing.

...and now

Then...

I believe in this verse, even through times of struggle (like what I am currently going through). And two years ago today, I posted it as our sheer beacon of HOPE. God is with us, even through our anger and confusion. As always, I am thankful for that.

"For I know the plans I have for you,' declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future."

Jeremiah 29:11

ONE. YEAR.

Excuse me... cough, cough... It's so, cough, dusty around here...

Welllllll, hello! Yes, it's been a long time. Trust me, I feel guilty about it. There's been A LOT going on!




In November, Renn decided he wanted to have a birthday party... for his BRAIN. We had one alright, and boy oh boy, was it SPECIAL! We had a grand event that included so many of YOU, it was unbelievable. The love, the hugs, the watching-our-boy-run-around-and-laugh-and-play... Just magical. We even had some special, incredible friends come and join us from a galaxy far, far away...

 

Our special thanks to The Twin Suns (http://www.thetwinsuns.com)  and the 501st Legion,
for coming out and making our Jedi's dreams come true!!

We also got the news in December that Rick's job transfer was granted, so we've been in the throws of trying to move. We're also still homeschooling, and that has turned out to be the BEST decision we could have made for our Jedi and his super smart and oh-so hilarious little brother, E. But, that means that this momma doesn't slow down. EVARRR.

Okay, so now that you're mildly caught up, I'd like to get to the very reason why I am posting. It's hard to do this without sobbing and blubbering all over my keyboard, but I need to give it a shot.

Friends, for those of you who have been going through this journey with us for THREE years (as of 2/26/15) now, I have the best news. Your prayers, your words of love and encouragement, your notes, gifts, pictures, shares, donations, hugs, and your pourings out of pure love, have led us here...

Can you believe it?

Are you sobbing? Blubbering?

Join the club.

I woke up this morning in a rush. The boys and I woke up late, and were running around in a frantic- ARRGGGGG kind of way, trying to get out the door to Community Day (our 2x a week meet-up with teachers and other home schooled students). I will admit, I was feeling too guilty- since I'd forgotten to make St. Patrick's day all special for the kids (I was lucky to have some green shirts clean for the kids!)- to pay attention to much of anything . But Renn, being the amazing Jedi he is, paused, grabbed my hand, and made me look at him. He raised his eyebrows and said, "You know what else today is, right, Mommy?" Instantly, I started to weep.

My boy... Seizure FREE?

I got to make a giant announcement in front of all the other 125 students and their parents, this morning at Community Day. Even though not a single one of them had journeyed with us through his tests, medications, surgeries, they erupted in cheers and celebrated with him. I watched the parents enter in the words "Purple Day" on their phones' calendars when I mentioned March 26th. I saw the support of a boy whom they barely knew, but they loved earnestly.

To sit here and thank each of you who has known and loved our family through all of this... heavens... I'd be here all day. But know that every time we look at our Jedi's face, we see your hearts. When we hug him, we feel your hugs. We are always and forever grateful for your kindness and support.

We are also indebted to the doctors, nurses, and staff at UCSF Benioff Children's Hospital. They became the instant family we needed in those dark days. We are thankful for their guidance, talents, grace, and love.

Now, today our Jedi is ONE YEAR seizure free. Does that mean he is cured? No. No it does not. Could the seizures return? Yes, that monster could awaken at anytime. However, we believe in a mighty God who has far greater plans for Renn than we could ever, EVER envision. So we will hold on to the promises we are given, and those will keep our hearts thankful and jubilant. It might not be a seizure free life that Renn leads, but he got one year, and we'll take it. We'll remember each and every moment that God gave us. Each smile, each soccer game, each laugh, and each milestone that our Jedi reached. We'll remember the encouragement that he gave others, and the joy on his face when he saw his presents on Christmas morning, and the prayers... we'll remember the prayers that his baby brother prayed every. single. night; The ones that begged God to "let Renn's scar heal, and to keep the seizures away..." What a true blessing, indeed.

By the way, this isn't just a celebratory week because of this monumental day, but also, Renn turns 8 on Thursday... EIGHT.

And to think, there was a moment when I didn't know if I'd see him turn seven.

Praise you, Father.

One year down, friends. Let's keep 'em coming!!!

"For the mountains may depart

and the hills be removed,

but my steadfast love shall not depart from you,

and my covenant of peace shall not be removed,"

says the LORD, who has compassion on you.

Isaiah 54:10

Epilepsy Awareness Month 2014: The New Normal

It's hard to imagine that one year ago today, the grid was on... and this Jedi was offering his Halloween candy (that was so awesomely smuggled in by Daddy and E) to the technicians who were watching over him.

We started off November, aka Epilepsy Awareness Month, knee-deep in the destructive path that Epilepsy carves. I remember so distinctly that we were recovering from the absolute terror that was Renn's near-death experience. His adverse reaction to Cefazolin almost took him from us. But, like the true Jedi that he is, he pulled through, and lived to fight another day.

Today, we started off Epilepsy Awareness month exhausted... from an epic night of Trick-or-Treating. Then, we jetted off to soccer in the rain, and we're now following that up with movies and cuddles on the couch. It's unreal. God has transformed the world we knew into this vast land of wonder, joy, and excitement. Granted, not everyday is easy. There is still an immense amount of fear (especially with me) that the evil seizures will return. But for now, they are at bay. And we never hesitate to thank our Heavenly Father for each moment that is seizure free.

In September, just four days shy of Renn being 6mos seizure free, our Jedi did something... odd. At soccer practice, he began to slowwwww dowwwwwnnn. It was like watching a real-life person pretend to talk/walk in slow motion. It was bizarre. I was quick to panic and lable the event as a seizure. Both Renn and myself left soccer practice that night just weighed down with disappointment. I couldn't even encourage him, because I felt that somehow I had failed him. Luckily, the hubs came in like the lionhearted man that he is, and helped us through it. When I called his Neuro team the next day, one of his doctors said she was incredibly confused by the description of the event and said we shouldn't be so quick to assume it was a seizure. She said he may have been overheated and dehydrated, and that his brain may have wanted to seize, but couldn't. Sure enough, it was 105 degrees outside that day, and I don't think he'd had enough water.

Needless to say, he's not had anything since. So, it's with great pride and thankfulness to God that we can say that Renn is now...

 7.5 months seizure FREE!!

Between soccer 5x a week, Cub Scouts once a week, homeschooling, and church... the new normal in this house is simply trying to keep UP with these two active boys. Thank you, God, that we still have the opportunity to do such a thing. We just came back from his post-surgical Neuro phych evaluation at UCSF, where we finally got to reunite with the Mighty C. It was a tearful reunion for me, as I watched the Jedi jump into the arms of the nurse he still refers to and talks about every single day. We've been back to UCSF about six times since surgery, and the Mighty C hasn't been there! So, this was an incredible gift for Renn... and hopefully the Mighty C as well.

As we embark on Epilepsy Awareness Month on this blog, prepare to hear from a couple more families who are journeying through it all, and prepare to learn a bit more about what it's like to live with Epilepsy.

Here we go! If you have a special way you spread Epilepsy Awareness, let us know! Or, if you have specific questions that can be addressed, contact us and we'll get to answering you right away.

God bless you all... Here's to being seizure FREE yet another day!

Epilepsy Families: Mason's Journey

Happy Labor Day, friends!!

We took a last-week-of-Summer-vacation break from the blog, last week. But, here we are again!

We are continuing our look into what Epilepsy is like for other families and kids.

This all started for us 2.5 years ago (officially). It's been a crazy ride, as many of you know. Tomorrow, our Jedi starts SECOND GRADE. Hard to imagine, right? This little man who was told he would have to repeat First grade, will be starting another big year. Per his request, we are homeschooling again. He has been so eager! Plus, his younger brother will also be homeschooled, per his request as well (E's, not Renn's). I'm going to be a busy Momma! But, we can't wait. And we are thankful for the opportunity.

Now, this is Brandi. She is mom to Mason, and absolutely scrumptious little man!! She wasn't sure how to write everything down, so we did this in a question/answer format. Please welcome Brandi!

**********************************************************************************

Hi! And welcome to The Brain of a Jedi!!

 

Please introduce yourself, and tell us your child’s name and age:

My name is Brandi and my son's name is Mason.  He will be 4 years old in two weeks and starting preschool next week.

How old was your child when he/she was diagnosed?

He was diagnosed with absence seizures when he was 2 years old.  When he was about 16 months, I noticed that sometimes his eyes would roll back and to the side randomly. And despite other friends and family members telling me that it was nothing- that I was just being paranoid, I knew that something was wrong.  One day he fell down the steps when his eyes rolled back and I knew it was time to call the doctor. They saw us the next day and ordered an EEG so we took him to UVA Hospital.  The first EEG was complete torture for him as I am sure they are for all little ones.  The doctor called me within a couple days and confirmed my fear that it was indeed abnormal brain activity which they would diagnose as Epilepsy. Since then, he has had another outpatient EEG, inpatient 3-day EEG, MRI, so many blood and urine tests that I can't count, and genetic testing. 

 Have you been lucky enough to find a medication that has kept seizure activity at bay? 

If so, which one(s)? Which ones have you tried in all? 

We have tried Levocarnitine, Keppra, Lamictal, Zonisimide.  Currently he is taking Levocarnitine and Llamical and he still experiences daily seizures.  It is questionable if they are as frequent as they were in February when he had his inpatient EEG, as he was having at least 20+ day then.  

Are there any other methods you guys are willing to/are having to try to get rid of seizures? (ie VNS, CBD oil, Lobectomy/Resection, or Ketogenic diet)

At this point we are unsure about trying other methods to control his seizures besides medication.  The most challenging part is getting him to take his medication twice a day.  There is a lot of begging and making deals to get it done.

  

Caring for someone with Epilepsy can be difficult and daunting at times. Do you have a lot of support in your area? What do you do to stay positive? 

I don't have a big support group of people that understand Epilepsy so if I have any questions I turn to this Moms of Epilepsy FB page because really my friends and family members just don't get it and feel that my husband and I just spoil my son entirely too much. 

What is the most challenging part about being a mother to a child who has Epilepsy? 

It is extremely difficult to watch him suffer and know that it isn't fair that he has to take his medication and have Epilepsy.  Also, I worry about him having a Grand-Mal seizure when I'm not there. 

If you could teach this world ONE thing about Epilepsy, what would you teach it?

If I could teach one thing about Epilepsy to people it would be to change the stereotype and get rid of the stigma.  People automatically assume that if [someone has] Epilepsy they also have an intellectual disability and this just isn't the case most of the time.  

Thank you so much for joining us, today! We love educating about this wretched condition, and are thrilled you have shared your journey with us!

one. HUNDRED.

This morning I woke up, and took a deeeeeep breath. Knowing full-well what today is, or could be, left me feeling both bewildered and thrilled. Believe me, that's an odd mix of emotions.

You see, when one has Epilepsy, each day without a seizure is a great day. But, no one likes to talk about how long it's been due to the immense fear that the moment you talk about it out loud, that will be the moment another seizure will strike.

Today a dear friend asked me, "When was the last time Renn had a seizure?" I gulped. I knew the answer, but all I kept thinking was, do I dare tell her?? It will happen if I do!


But it hit me... Not only CAN I tell her, I SHOULD tell her. This woman prayed and prayed for us, after all. Why shouldn't I share what God has done in Renn's life?

Quietly, meekly, I muttered the answer. And then I shared with her my struggle with my superstition. As I spoke, I heard myself say something so dumb. My sweet friend called me on it. She said, "You know, thinking that [you telling the number of days it's been will jinx it] means you think your words have all the power. And Bethany, they don't. God does."

She's absolutely right. We have been praying and praying, and there's no reason to sit on this secret! GOD has helped Renn this far. He deserves the praise... It's all Him.

So, with that, our precious Jedi has something he'd like to share with you...

Praise the Lord!
Praise, O servants of the Lord,
praise the name of the Lord!

Blessed be the name of the Lord
from this time forth and forevermore!
From the rising of the sun to its setting,
the name of the Lord is to be praised!

Psalm 113: 1-3



180 Days...

It's been a long time. A really long time. And I deeply apologize for that.

First of all, I became saddened when somehow this beautiful blog of ours lost ALL its pictures. I was able to get a few back, but most of them are gone. Thankfully, I own each picture, so that's not the issue. But for me, I am a visual writer and I feel like all that time we spent in the hospital and all those words I wrote are near meaningless now.

Okay, okay... Complaining over.

Now, today is a special day. To you, it might just be another Tuesday... maybe even a day where you wished to God that you hadn't drank SO many margaritas on Cinco de Mayo. But for us, it's a day that has come that we do not know how to comprehend.

It's officially been...

260,640 minutes.

4,344 hours.

180 days.

Twenty-five weeks. 

Six months.

Half a year.

Since...

 This day.

That's right, friends. Six months ago today, I was writing to you BEGGING for prayer. BEGGING God to save our son as they removed 50% of his right temporal lobe. BEGGING that this whole thing was a vicious nightmare that I would soon wake up from.

It's hard to believe it's been that long already.

Things have changed a lot since that day. We've had two 911 calls and a grand total of 15 seizures... each far worse than the other, one even lasted about an hour long. We placed Renn back on a medication that was the only one to show any signs of working (Lamictal... it helped him go 8 weeks seizure free in 2012. It worked longer than the surgery did). And we've had a vision scare that required us to go back to UCSF for a 72-hour VEEG.

 We also brought Renn home to homeschool him.

And this... this is why I am writing and where I will begin ALL the good news.

Renn. Is. THRIVING.

He turned seven in March... SEVEN! He is doing so well in school, it astounds me. His handwriting is legible, he has found a new love for math and history, and he has finally begun to rid himself of the lies he told himself while he was in his old "brick and mortar" school. His 72-hour VEEG was 100% CLEAR. That doesn't mean he's "cured", but it means that at that time, he had a "normal" brain!! He is finishing up his first full year of Cub Scouts, and cannot wait for days off with Daddy so they can go fishing.

He laughs, friends. He is joyous. He is our sweet Renn, once again (minus quite a few teeth!).

These days, I refuse to say how long it's been since his last seizure. He had an exact six week stretch where he went seizure free, and on the very day where I admitted out loud that things may be looking up, I had to call 911 to rescue our boy. However, know this much... It's been a while. And we are thankful to God for every moment that he lives without issue.

We want to make every effort to continue with this blog. As you can imagine, time isn't on my side, too much, now that I am a full-time homeschooling momma (Eli will be starting Kindergarten here at home, in the fall, too!)! But I will be sharing stories from other families, as it is our family's goal to educate as many as possible about Epilepsy. We have such high hopes. We pray DAILY that we never see another seizure...

Six months have passed since the day we were certain we were going to lose our son, even just a small part of him, forever. We are incredibly thankful to belong to a God who never allowed us to collapse. He never doubted the strength He gave us, or that we would not endure His plans. Even on our darkest days, in these last six months, He showed us this scripture (which is mounted on our refrigerator), and we haven't looked back.

I have made you. I will carry you;

I will sustain you and I WILL rescue you...

Isaiah 46:4



May the Force Be With You all... More to come. :)





In a Galaxy Far, Far away...

Hello, everyone. This is the first post, of a new blog that I hope will generate lots of love. This blog will be all about our adventures dealing with our 5 year-old son's Complex Partial Epilepsy.

I cannot promise you that it will all be laughs, fun, and games. But, I can promise that it will be real.

A quick background:

My husband, Rick, and I have been married just about eight years. Renn came first, in March of 2007, then Eli joined us in February of 2009. We are a highly active family, that rarely slows down. Sure, we take time to smell the roses, but it's usually done in a drive-by fashion! We love to be outdoors, and to be together. We live in the Central Valley, in California. We hope to someday move somewhere a bit more spacious, but for now, we're thankful for where we are.

Rick has a job that we can't talk about, and boy-oh-boy, are we proud of him. He loves the Lord, and that's his best quality. He's strong, funny, has his degree in Biology, played trumpet in the Fresno State marching band, and can handle pretty much any task placed before him. To say that I am a lucky gal, is an understatement.

I am a children's book author, but am also honored to be a stay-at-home mom. My family is my world.

Eli is a vibrant child who has been getting the short end of the stick, lately. But, I don't think he notices. He's a firm believer that he will rule the world one day, and I can see it coming true. He's strong and funny like his daddy, and is so lovable, his hugs will rock you to your core.

And that brings us to Renn...

Renn. Loves. Star Wars. And so, he is our little Jedi. No disrespect to Mr. Lucas, but Renn is a bigger and better Jedi than Yoda, himself. He is brave. He has a strength within him at 5 years old, that I simply do not understand. His journey with Epilepsy began in March, and you can read all about it HERE. But for those who followed back then, now is the time to share what happened yesterday.

As most of you know, yesterday we traveled to UCSF for what we thought was a simple introduction to his new doctor, and a consultation for a better Video EEG. However, when we got there, the story played out quite differently.

Long story short (okay, I'm skipping the introductions, and each time we begged,"Boys, please sit down!"), the doctor told us her plan. First, she was going to look over Renn's MRI and EEGs. If she thought that we needed to re-do them, then that would be the first step. If not, or after we re-did them, we would do one of three things.

1. We would go straight to surgery to remove anything she was able to find on the MRI. The first MRI showed nothing, but in the event that the UCSF MRI was better, and she saw something, then we'd take care of it.

2. (And this is where it gets quite scary) We will to something called a MEG (can't remember what it actually stands for, as I was about to throw up at this point in the visit), which is basically a magnetic view of his brain so we can pin point where the seizures are coming from. Or, we'll admit him to the hospital, take him off his meds, and inject a dye into his body every time he has a seizure. Once we pin point the general area, we move onto the next step...

3. They will take him into a two-part surgery. First, they will remove part of his scull, and attach the electrodes to his ACTUAL brain, to determine the precise location of the seizures. After that (not sure if it's weeks later, months later, or if it's during the same surgery- as I was pretty much a blubbering mess while she explained this), they will have a second surgery to remove whatever it is that is causing all of this.

The kicker? The surgery only has a 50-60% chance of changing anything.

That's. It.

We now have a tough decision to make. How do we choose between allowing our little boy to undergo such a HUGE surgery, or not giving him the chance at a "normal" life?? If he continues without surgery, he will not get a driver's license. He will not be able to grow up and become a Police Officer, like he so desires. And that kills us. We've simply run out of medications, now... So, we're taking on Master Yoda's infamous advice...

 

"Do or do not. There is no try."

So, as we go along, please join us. Please pray for Renn, and all the millions of others who are battling this disease. Ask others to do the same. And share Renn's story! In fact, please share any information that you feel I've given, that could help someone you know.

 

Renn is a Jedi, alright. And he's going to pull through... God has the biggest and best plan set in motion for his favorite Jedi. He says so, in Jeremiah 29:11. And we're grateful for that promise.

 

Thank you for joining us on this journey...

 

 

 

...more to come.