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: Noah's Journey (pt. 2)

Welcome back!! Here is part TWO of Noah's journey, as told by his incredible mother, Mallory. If you missed it, you can read part one HERE.

Back to you, Mallory!

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

September 2013 Noah had a neurologist follow-up and it was at this time his neurologist wanted to get down to the nitty gritty and figure out why Noah was having seizures.  Noah’s neurologist was going to schedule him for an up-to 7 day VEEG (Video EEG) as an inpatient.  While in the hospital they were ordering a high-resolution MRI, and a SPECT Test (with and without dye).

November 2013 Noah was admitted in the hospital for his VEEG, MRI, and SPECT Test.  We only had to stay for 2.5 days because Noah had enough seizures while at the hospital that they were able to get all the testing done as well as obtain enough information that they were comfortable in sending us home. 

This was the results of his testing:

Study recorded 13 electrical clinical seizures (5 night one, 1 at nap, 7 night two) that all began with a tonic seizure followed by a cluster epileptic spasms.

"The EEG onset appeared to have arised from over the right posterior hemisphere near an area that appears abnormal on the MRI scan representing a possible focal cortical dysplasia.  These results and potential for surgical intervention will be reviewed at an upcoming epilepsy conference after which time the parents will be called with a recommendation."

After receiving these test results our neurologist from Texas Children’s Hospital informed us he was leaving to go to a hospital closer to his home.  We, thankfully, got added to the head neurologist at Texas Children’s Hospital.  We hadn't actually met him, but we had an upcoming appointment that we were looking forward to.

By December 2013, Noah was having a terrible time sleeping because he was having so many seizures at night.  Noah’s neurologist then added a second medication Clonazepam for him to take with his other medication, Trilepital.  The Clonazepam helped Noah sleep better, but he was still restless.

In April 2014 we met with the head neurologist, Noah’s new neurologist, at Texas Children’s Hospital.  This is what we found out:  We finally found out WHAT is causing the seizures?  Noah's seizures are happening due to Focal Cortical Dysplasia in the right posterior (back) part of his brain.  Basically meaning he has one spot (focal) where the tissue (cortical) of the brain is abnormal/not developed correctly (dysplasia).  The doctor told me this was nothing I did during pregnancy or anything Noah did since being born; his brain just didn't completely developed properly in womb.  The exact type of seizures Noah is having is called "complex partial seizures."

Another answer to a question we have was, will he grow out of the seizures/epilepsy? Here's the answer we got.  Most kids who grow out of their seizure disorder will have normal MRI's and have their seizures easily controlled by medication.  Clearly this is not the case for Noah.  His neurologist told us that unfortunately, Noah will not grow out of the seizures.  He will live with them.

We were then informed of the four ways to control epilepsy.

There are four ways to control epilepsy; with specifics on my son’s particular case:
1) Medicine

2) Surgically remove the area where the seizures occur (as long as they are in one location; if the seizures are in multiple locations, surgery really isn't the best option)

3) Special diet called Ketogenic Diet (not recommend by our doctor because it's a hard diet to follow and he tends to only do this for those with NG-feeding tubes; plus once you hit teenage age/adulthood it’s not recommended)

4) VNS (Vagus Nerve Stimulation) which is a pace maker that sends electrical shocks to the area of the brain where the seizures are occurring.

Our doctor flat out told us that Noah could have surgery now, but he likes to have two failed attempts where medication does not control the seizures.  Although Noah has been on four different medications since 3 months old, our doctor is only counting the main one he is on now, Trilepital, because the first two weren't for exactly what Noah has, they were more for the spasms; and the Clonazepam medication is not used as a primary medication to control seizures, it’s typically a secondary medicine.  So only with this information, Noah has only had one failed attempt to control the seizures.  With that said, Noah is getting another medicine to start this week, Onfi.  If the Onfi fails, meaning Noah cannot be seizure free (not even one) for 3 consecutive months than that will count as another failed medication attempt.  At that time we will then take on the surgery journey to remove the portion of Noah's brain causing seizures.

I asked his neurologist that if Noah proves the medication route doesn't work, then how long it would take to get him in for surgery.  The neurologist said 3-6 months.

 

We left that appointment with Noah’s third medication, Onfi (added to his Trilepital and Clonazepam).

By mid-April Noah had already significantly failed the new medication and the process of a surgery date had been started.  We met with a neurosurgeon where we all agreed that a Subdural Grid placement followed by a resection was our best option for Noah’s surgery.  With this route they gird is like an EEG, but on the surface of the brain.  This gives them a more precise location of where the seizures are coming from; the other option was to just go in and remove the focal cortical dysplasia part.  We didn’t feel that was completely necessary, so we went with the grids.

July 8, 2014 Noah went in for part 1, subdural grid placement, for his brain surgery.  Surgery for placing the subdural grids took 8 hours from the time he left our side until we got to see Noah in recovery.  He had an 8x6 grid placed, 48 little EEG monitors, and 4 internal probes that help determine the depth of the seizure.  I will not lie, seeing Noah in recovery was the worst feeling ever.  I have never heard such a painful, hoarse cry.  

I remember just looking at him and my husband and thinking, “what have we done?”  He had a drain from his head, a catheter, two IV’s (in the end he had 7 IV’s placed), an aterial line, blood pressure cuff, and the no-no’s (which are Velcro arm braces to keep him from bending his arms at the elbow).  The first 24-hours he didn’t sleep at all and was quite uncomfortable, yet in good spirits.  He was placed in ICU for 24-hours, and then we were moved into the Epilepsy Monitoring Unit.  Noah had multiple seizures the second night at the hospital including one that lasted 4 minutes long, which is the longest that he’s ever had to my knowledge. 

By July 10, 2010 (this happens to be my husband and my wedding anniversary, 2010) they were taking

Noah back in for his resection at 1:30pm.  This surgery, the right occipital lobe resection, took 12 hours.  When we finally got to see him in recovery he was in much better spirits then the first time.  The neurosurgeon told us that everything went well and that when they tested for seizure activity before closing him up that the EEG went from active before surgery to completely inactive after surgery.  We were thrilled.  Noah was placed, again, in ICU for 24-hours and then moved back to the Epilepsy Monitoring Unit.  

We were able to leave the hospital by July 13, 2014.  

Noah has been seizure free since July 10, 2014!!

This is the longest he has been seizure free in at least a year. 

Noah is a completely different kid.  He is learning so much in the past few weeks.  He can sing almost all the words to “Twinkle Twinkle”, before he only knew “twinkle”; he’s copying saying his ABC’s; he’s counting; and overall he’s more interactive with everyone.  Noah is also not nearly as, shall I say, naughty, as he was prior to surgery.  He listens more and understands what’s being asked of him, so that results in less time outs and more fun times.  My heart is filled with overjoy.  I will not lie; I fear that one day this will all end and the seizures will come back.  My husband and I have talked about this; we both agree that if he starts having seizures today that these past four weeks have been absolutely worth the surgery.

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

Thank you, Mallory!! What a week it has been, sharing your story!

Now, for any new Epilepsy families out there, Mallory has also added a list of meds that Noah has been on, as well as their side effects. This information can be very helpful, as you are learning more and more about the condition that is a part of your lives, now. 

Remember, 1 in 26 people have Epilepsy.

Medicines & the Effects on Noah PRIOR to Surgery:

·         Predisone

o   Made him go from small/petite to very chunky

o   Made him very sleepy (slept easily 18-20 hours a day)

·         Phenobarbital

o   Made him tired

o   Made him irritable

o   Caused excessive learning delays

o   Eventually hated the taste and refused to take it

·         Trileptial

o   Made him tired

o   If increased too much too fast it would make him extremely nauseous and make him walk like a drunken sailor

o   Made him irritable, but not as bad as the Phenobarbital

·         Clonazepam

o   No bad side effects

o   Helped him get some sleep at night and control his bedtime seizures

·         Onfi

o   Made him tired

o   Made him irritable

Epilepsy Families: Noah's Journey (pt. 1)

The family we are talking about this week is near and dear to our hearts. They just endured watching their son have a lobectomy as well. The difference? Noah is THREE.

Mallory, Noah's mom, had a difficult time condensing his super long story down to one post. I assured her that that makes TOTAL sense, and that it's 100% okay. In his short lifetime, Noah has been through so much. But I can promise you, this journey has a happy ending... or is it happy new beginning?

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

My son, Noah, was born May 19, 2011.  Noah started having infantile spams at 10 weeks old.  However, we didn't know that’s what they were.  I just remember holding him or watching him play on the floor and then all of a sudden start twitching uncontrollably for what seemed like forever, but in reality it was more like a minute or two. 

 Just to give a little background, I had the absolute perfect pregnancy with no complications.  He was born 38w6d via emergency c-section only because I was in the beginning stages of labor, he had been complete breech the entire pregnancy, and the OB/GYN thought my amniotic fluid was infected because I wasn't feeling well that day at all.  My fluid was infected, but Noah was perfectly healthy and had no complications.

Fast-Forward: When I explained these “twitches” over the phone to my pediatrician at the time, at Ochsner Medical Center in New Orleans, she thought it sounded like when someone is just about to fall asleep and they bob their head and jerk it back.  At the time that seemed feasible to me, so I went with it.  The longer this continued the more I knew that this wasn’t right.  He was having these “jerks” anywhere from 10-20+ more a day, and each “jerking” session had at least 30-100+ “jerks.”  

At around 4 months old my husband and I took our son in to the pediatrician because he was having bad gas problems.  Coincidentally, Noah had one of his “twitches” in front of her and she immediately looked at us and said, “Is this what he’s been doing?”  We replied, “Yes.”  She then left the room, came back, and said, “I believe your son may be having seizures.  I’d like for him to go upstairs to get an EEG done right now, as well as blood work, and a urine collection.”  My husband and I were in complete shock.  Never in our minds did we think our son was having seizures; that seemed impossible.  Nonetheless, we went upstairs and Noah had his first EEG.  The EEG came back with abnormal results, blood & urine work came back normal.  We were then referred to a neurologist & genetic doctor.  Noah was sent home on a prescription for a steroid, Prednisone. Noah took Prednisone from September 2011 until December 2011.  Once Noah was weaned off Prednisone he started Phenobarbital; they actually started weaning him off the Prednisone while slowly adding the Phenobarbital in December 2011.  He had also undergone an MRI to check for any abnormalities in the brain; results came back “normal.”  

By January 2012, Noah was only on Phenobarbital and we thought it was the miracle drug.  Noah stopped

having his infantile spasms and was seizure free from January 2012-May 2012.  Just after Noah’s first birthday, the seizures started to come back; and these seizures were stronger than ever.  By this time, Noah had been in the Early Childhood Intervention (ECI) program for his learning delays.  He started ECI at 5 months old.  Noah did absolutely nothing, but sleep.  He had stopped rolling over, he didn't smile, he didn't laugh, and he didn't engage with anyone.  Noah was seeing a speech pathologist (who worked on feeding as well), a physical therapist, and occupational therapist, and a specialty instructor who helped with pretend play.  

We saw the genetic doctor to rule out any other abnormality.  The genetic doctor did all of his tests; they all came back normal.  However, the genetic doctor felt he had “secondary mitochondrial disease.”  Oddly enough, we found out that this was his “go-to” diagnosis when he couldn’t give the parents an exact diagnosis.  This genetic doctor couldn’t even tell us what it was secondary too.    Of course we wanted a second opinion and we were just in luck.  My husband had accepted a job in Houston where we were then able to take our son to the #4 ranked hospital nationally, Texas Children’s Hospital.

Finally, we moved to Houston.  Noah went to his first neurologist appointment in Houston in the Epilepsy Clinic at Texas Children’s Hospital in November 2012.  First of all, this hospital is absolutely amazing and everyone is super friendly; I highly recommend them if you’re able to go there.  This is when we were actually told for the first time that Noah had a “seizure disorder” called Epilepsy.  Before now, the doctors in New Orleans just referred to it as infantile spasms; wow was that a bit of a shock to the system, especially when the Houston neurologist said that it was already in Noah’s charts as Epilepsy. We then started discussing everything that had been going on.  As soon as our Houston neurologist heard Noah was taking Phenobarbital the first thing he said is, “We are going to wean him off that ASAP.”  Of course my husband and I were thrown off by this and we asked them why.  Noah’s neurologist explained that Phenobarbital is one of the first medications on record to treat Epilepsy and it’s proven that Phenobarbital causes learning delays on top of other complications. So our neurologist added Trilepital with Noah’s Phenobarbital.  Noah also had two additional EEG’s at this time, an MRI, and blood work.  Both of Noah’s EEG’s came back abnormal, and then his MRI and blood work came back normal.  Noah started his wean off of Phenobarbital in December 2012 and was completely off of it by January 2013. 

Between January 2013 and May 2013 we basically monitored Noah and his seizures.  I have kept a chart since he was about 5 months old where I tallied each seizure, AM or PM, what it looked like, what he was doing, how long it lasted, etc.  I take these charts, which I still use today, to each appointment to be analyzed with Noah’s neurologist.  Almost immediately after Noah was completely weaned off the Phenobarbital he started learning and doing things he had never done before; it was like night and day.  We were happy that he was picking up on things and we loved the new change in Noah.

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

Thank you, Mallory for part one of this story!! 

Please join us, as we look forward to part two, on Wednesday!

Good News Throughout The Galaxy

Freshly back from our 6 month post-op follow up appointment at UCSF!

 ~ Okay, I know his surgery was 8mos ago. We pushed this appointment back a bit. Can ya blame us?~

 The news is fantastic! As we walked out of the elevators from the parking garage on Parnassus, we ran smack-dab into a nurse we had on one of our various stays. She all but squealed with delight as she hugged us and asked for the latest update.

We felt at home all over again, but this time, in a peaceful way.

As we walked into the Pediatric Neurology clinic, I watched our Jedi lead the way. I couldn't help but remember the first time we went through that arch way... But I'll save that for another post.

We saw one of our many favorite Neurologists. We sat and talked for ten minutes about how our summer was going and how nice the weather is in S.F. in comparison to the 110 degrees it was back at home. Eventually, she asked a question that I had honest to God forgotten would be asked of me.

"Any seizures?"

That's right... SHE. DIDN'T. KNOW.

I let Renn tell her. It's his victory, after all.

He said, "No seizures. None. Are you proud of me?"

She looked at me with awe and hope (as I'm sure she couldn't quite believe my sweet boy), and I said, "Not since March 16th."

She cried. Then she jumped up and double-fisted-knuckle-bumped my boy who was BEAMING. She texted Dr. Genius to GET IN HERE, RENN IS HERE, and he came quickly,(later telling me he expected bad news). When she told him, a giant smile spread on his face. "Glorious. That's my boy." is all he said.

All in all, it was the best appointment we've had since we started this journey. I praised God the whole way home, and hoped that Renn's little light shown bright in that office, enough to give someone hope.

We go back in November for his ONE YEAR post-op appointment, and his post-op Neuropsychological Exam. Can't believe it.

However, in the ever-growing saga of our Jedi's life, we have something fun to share!

The Epilepsy Foundation of Northern California is having a remarkable event at Children's Hospital Central California on August 9, called Living With Epilepsy. It's going to be a fun day of great information and resources for families living with Epilepsy in one way or another.

The cool news is that our Jedi (and the rest of us, too) has been asked to share his journey with the audience! We are SO honored, and Renn is incredibly thrilled. We're getting pictures together of his surgery process- that includes the good and the bad, just like you've seen here. We are also trying to think about the most important details to discuss with others. 

Renn wants kids to know they don't have to be afraid.

Of course he does.

We are eager to meet other families like ours! So please pass this around (especially if you live in/near the central valley of California, or know someone who does!) and join us, because we'd love to see you! Everyone is welcome. Please just click HERE to register ahead of time so we know how many to expect!!

And starting in August, this blog is going to host different stories of families living with Epilepsy. Many ladies from a support group I started called "Moms of Epilepsy", have decided to bravely face the challenge of sharing their struggles, pain, success, and fears. The goal is to ED-U-CATE this world, and truly help spread the word that Epilepsy is a condition that needs more attention! I hope you'll join us...

Thank you for your constant love, prayers, and support, friends. God is so good...

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