Over a Year...

Over a year since my last post.  Yikes!  I have thought about that a lot over the past several months.  BUT, since time travel is still not possible, nothing can change that except getting on and doing a post.  So, here we go.

In this past year plus, much has changed and much has remained the same.

There were a few growing pains last year when school started, primarily with the program Evan is in as two programs merged (temporarily) into one.  Everything got ironed out.  We made the decision prior to the start of school last year to have him repeat 1st grade.  He was progressing as fast as everyone else in the class, but everyone else was more advanced than he was.  The gap just wasn't closing, and seemed so big.  By having him repeat 1st grade, it helped to close that gap for him and put him more in line with his peers.

Evan really made some strides both with his understanding of the various topics as well as in his social growth.   Progress in all areas, just on Evan's personal timeline.  I cried (literally!) when I saw his final report card.  He had scores on his general education report card I have wanted to see for 2 years, but feared I would never see.  Scores that he was "at grade level" in several areas.  All question as to whether we made the right decision by having him held back was answered, just like that.

In December he had a 24+ hour EEG.  This was his second such EEG and, as anyone who has been through one of these, it was emotional and difficult at times.  We choose to stay at the hospital for these so we have the benefit of the video component (VEEG).  All I can say is...Hats off to OHSU!  Both times they have really done a great job with keeping Evan engaged and entertained.  Art projects, visits from service dogs, various musicians, and Make a Wish was also there during this stay.  THE BIG NEWS of this VEEG is that it was drastically different than his last.  His last VEEG about 3 years ago apparently showed tons of abnormal activity.  This time, Evan's neurologist reported seeing just one abnormal spike (YAY!) and commented that he had to look at the old results to remind himself where Evan's activity had been.  We are all so very hopeful that he is outgrowing this!

After that, it was pretty much smooth sailing.  Evan finished up 1st grade and summer was upon us.  No seizures since the beginning of December, so we fell into a sense of comfort.  I, for one, was really starting to believe he had indeed outgrown them.  6 months, then 7 months pass.  The "reality check" part of my brain was still there, but with each passing day, became quieter.  Towards the end of July, our hopes were dashed (for now).  Evan had a seizure, and a post-ichtal like we had never seen before.  But, what do you do?  Even though we were heartbroken, we move on.  Start the count again.  Pray.

Evan has not had a seizure since then.  We are still guarded, but continue to be hopeful.

In August we took a trip to Wisconsin to visit family.  The kids were ecstatic to fly on an airplane.  I was nervous at first (how do I get all his meds/supplements in carry-on, what documentation do I need, what about food for him, etc), but after a phone conversation with a super nice guy at TSA (yes, TSA!), many of my fears were put to rest.  We all had a great time connecting with family, spending time at the family farm, doing a lot and not much.  One main highlight was going to Kalahari, a HUGE water park/hotel at Wisconsin Dells.  An epic trip and great cap to the summer.

Evan is now a bright and cheerful 2nd grader, and the year has gone very well so far.  He is definitely independent, and is determined to do a lot of things himself.

First day of School - 2016

Watching him grow is a daily gift.  Just this past month he has actually proposed a compromise to his brother when they were arguing about what they wanted do!  Normally it would have been the classic "Yes"... "No"... "YES!"... "NO!" back and forth battle.  I was sitting at the table at the time, and got up to guide and intervene.  When I asked what was going on, I couldn't have been more shocked when he told me about the compromise he had offered up.  I was speechless, and touched.  My heart was so warmed because we had been working on this for a long time.  The cognition aspect and the connections in the brain that make this happen, were THERE!  This time, the problem was his pre-teen-ish brother being a bit obstinate (oh the joys of pre-teen-hood...and this is just the beginning).

Another growth area has been a bit harder.  With all of these connections happening, his awareness is awakening.  Evan is becoming more aware of his epilepsy and how that makes him different.  He asked one morning not that long ago if I had seizures (I don't), then if dad and his brother do (they don't).  His face sank, and he said with sadness "So just me?".  I gave him a hug as I choked back tears and explained that there are many MANY people out there with epilepsy, some even at his school.  I hopped onto Facebook and showed him some pictures of people with epilepsy that were on one of the groups I belong to.  Many other boys, girls, adults...all ages, all so individual, also experience epilepsy.  He seemed to feel a bit better.  As his bus pulled up to take him to school, I wished we had more time to discuss it.  He often will make statements or ask questions about "when my seizures are gone", mainly around food/diet given his restrictions.  He wants to be able to have hot lunch once in a while.  He wants to be able to experience the same foods other kids get to experience.  I want that for him as well, so very badly!

This epilepsy thing isn't easy, but I am so blessed that God chose me to be his mom.  I'm thankful he is a tough kid and that we have a great support network.  I have faith that it is God's plan that one day he will be healed and get to have those experiences.

We are alive!!

Hi all!!

Just a quick post to update you on how we are doing since I realized my last post was over a month ago (yikes)!!

Evan did have a "mild" seizure as we were packing up on a Sunday preparing to go home from our big friends & family camping trip.  Just one more day would have marked 15 weeks since his last seizure.  It was a hard pill to swallow...with each seizure we are hopeful it is the last, especially as so much time passes between.

So, when faced with the reality, we focus on the blessings.  We were so blessed to have so many kids and adults around to help.  Evan was actually riding his bike at the time (wearing a helmet...ALWAYS a helmet!) and reportedly bumped into a parked truck and then wandered into the campsite it was located at (not people we knew).  Kids who were with him recognized something was wrong and alerted us as well as some friends who were in the next site and everyone flew into action.  By the time I got to him, he was already coming out of his seizure.  We were very thankful that we didn't have to administer his Diastat, and so thankful for all the friends and family that we were surrounded by.

I was also thankful this seizure was so mild in comparison to the last two.  In my mind, this tells me his Lamictal does do something, and that it wasn't at a therapeutic level during those last two seizures.  Lamictal is part of our tripod...medication, diet, and naturopathic medicines.  If one leg is not up to snuff, the whole thing is off balance.  I feel a bit of relief knowing that he is at a more therapeutic level.  When I first wrote that, I initially I felt more comfortable...but I didn't feel that was accurate and honest.  Comfortable isn't something we have truly experienced in relation to epilepsy since Evan's diagnosis.  That simply doesn't come with the territory.  Feeling a bit of a relief is a win in my book!

We have been on several camping trips since (with at least one more planned) with great success.

This week the focus has honestly been on back-to-school preps.  Oh and where, exactly, did this summer go?  Wasn't 4th of July like last weekend???  Finished up the school supply shopping, got some new kicks for the kids, a few new shirts, and Evan got a haircut since he wants his hair longer these days (and Mama don't know how to do that right).

My handsome lil' man all ready for 1st Grade!

Tonight is "back-to-school" night at the schools, so we will be dropping off school supplies, medications, and rushing around trying to get everything packed in that we can (see classrooms, teachers, sign up for PTA, get planners....the list really does go on!).

AND... I am working on a bigger post (or two)....so stay tuned!!

Camping Fun!

First, and update....we are still (carefully) counting the days since Evan's last seizure.  He seems to be doing really well (knock on wood), but we are still in Def Con mode, carefully watching, listening, and worrying (and praying that the last seizure was the last)!

2009 - both boys have been camping since
 they were literally just months old!

Camping is one of our favorite family activities.  Both my husband and I have great childhood (and adulthood) memories of camping trips filled with adventure, exploration, staying up late around the campfire, and of course, S'MORES!!

For Evan, he gets to enjoy most of that.  Staying up a little late is ok, but he is in bed before just about everyone else.  AND...NO S'MORES!!  The sugar, the carbs, ugghhh!!  All a MAD diet no-no!  The good thing is, because Evan is in bed rather early, its easy to wait to do s'mores until after he is in bed.  BUT, that doesn't mean he isn't without his share of special treats.

TREATS and SNACKS:

Ok, lets hit this point first.  Its often the most important in a kids eyes as they build up quite an appetite hiking, exploring, walking downed trees, riding bikes, and (as seen below) hunting crawdads catch and release style.  That was his first time, and he was SO proud of himself and excited.  Highlight of that weekend for sure.

2015 - This was the best pic I could get of him with a crawdad.
Tried to get him to smile but he was busy concentrating on holding it,
then off and running searching for more!

Gah!  I digress!  Back to treats and snacks....I always am sure to bring other treats for him so that he doesn't feel completely left out.  The Hemp-Hearts cookies are a big one.  You don't worry about them spoiling or melting, they are a cookie (need I really say more?) and he truly loves them.  As we make camping preparations at home, he will watch (and often help) make the cookies...but he doesn't get to eat them until camping (I know, I'm cruel).  The suspense makes the reward feel so much more special.  He will proudly tell others "I get to have a cookie later!!" and it makes me smile.  He is happy...and I am happy because he feels included and like he is getting a special treat, and also because I know how good they are for him and his brain.  

OH!  And FLUFF!!  You can't go without fluff!

I will also seek out other snacks that he gets primarily when up camping such as low-carb/gluten-free meat sticks and a dish of some "nacho" cheese stuff (be sure to look at ingredients list and carbs as it definitely can vary!).  We are also sure to pack his go-to favorites (almonds, pistachios, macadamia nuts, pork rinds, cheese sticks, olives, pickles, sliced fresh veggies, etc).  That way he has a good variety of preferred snacks.  Just be sure, when giving a snack, that there is some fat content.  For example, if I give him some fresh veggies I also ensure he has something with it that has a higher fat content as well, even if its just some cheese or nuts.

MEALS:

I try to do as much food and meal prep at home before we go so that I can relax and enjoy the great outdoors as much as possible.  Breakfast is often omelette cupcakes or eggs n' sausage with a bit of fruit, both easily reheated in foil over a campfire of in a pan.  The eggs...not the fruit! 

We keep lunch simple as I think the kids often see it as an unnecessary interruption of their play.  Often its just deli meat and cheese with salad or some favorite sliced veggies.  

Dinner is sometimes what we are all eating, and sometimes a substitute if what we are having is not MAD friendly.  Hot dogs are almost ALWAYS on the menu for one night.  I like brands that are not only low in carbs, but that also have no added nitrates or nitrites (I have the same criteria when looking for deli meats).  Hot dogs can also be a good quick n' easy lunch.  In the past up camping, we have had a version of Philly cheesesteak sandwiches that the meat/cheese/veggie part is MAD friendly.  So he just gets his Philly without the bread but gets to share in the super delish part.  Or maybe its a foil-pack dinner with a mix of kielbasa (or some other fatty meat) and preferred veggies and some dip.  Whatever it is, we make sure dinner comes with some veggies/salad and, depending on the carbs he has had that day, maybe a bit of fruit for desert.  AND, because they are good for his brain and very low carb, I don't hesitate if he wants a "second" desert of his fluff and/or cookies (see above on Treats and Snacks).

BEVERAGES:

We have come up with a few things that help Evan to feel more part of the kid crowd when up camping. As they are slugging down soda and juice, he is drinking his "fizzy water " (flavored seltzer water).  LaCroix and Dasani are both brands around here that have zero carbs, have a good variety of flavors, and come in a can for that "I'm drinking a soda" feel.  When the kids are sipping hot cocoa in the mornings, so is Evan.  His version is just 100% coco powder dissolved in some hot water, then I add his heavy cream and about 3-4 stevia drops and voila!  MAD Cocoa!!  You can even put a dollop of "fluff" on top for the whipped cream!  Then, we all are drinking water, Water, WATER to ensure we stay hydrated...especially if its a scorcher of a weekend.

OTHER CONSIDERATIONS:

As any parent of a child with epilepsy knows...planning is key!  So, when we go camping, we choose places to camp that are not too far from emergency services (about 20 minutes from the nearest fire station is about our comfort level).  We have had to decline camping trips in the past because they pushed that level beyond our comfort zone, but know we were doing the right thing.  Evan's life and health is of utmost importance, and given the severity of his seizures as well as complications he has had in the past, we just can't risk it.  Its also important to KNOW where those services are.  Do a little pre-planning and mapping.

We also have a plan.  If Evan were to have a seizure when up camping, we don't wait.  We hop in the car and start heading for emergency services right then and there with his "grab bag" in hand so diastat can be administered en route if needed.  If he comes out of it on his own, or even if he needs diastat but responds and has no complications, fine...we turn around, happy to return to camping.  BUT...if he has a prolonged seizure that the diastat is not bringing him out of, or has complications as a result of the diastat (BOTH of which have happened to us!) then we are already on our way to medical help!  Its horrible to think about, but its our reality.  We have to think about such things, now.

We don't want epilepsy to control our lives or stop us from doing what we love.  We still do what we love to do, as a family and individually...but with added preparations and safety measures in place to do what we can to minimize the risk.  We cannot take away all risk...risk is part of life, and part of living.  And we choose to live.

From a few years ago (2012 or 2013) with a good friend.
Captures the spirit and joy of kids and camping.

Def Con

Does this happen to any of you?

I feel like we are walking on eggshells right now.  On borrowed time.  We are past the usual timespan between "episodes" (see previous post on "Superstitious" if you want to know why I'm using these terms...just a little stitious!!).

If he is quiet for too long...I tense up.  If he doesn't respond as quickly to questions...my stomach flips into a knot.  At night...strange sounding movements and I'm holding my breath, praying as I check on him.

We are hoping for the best.  Always are.  Hoping the last seizure truly was the LAST.  But, we can't help feeling like that his epilepsy is just sitting there, toying with us, amused every time we jump as fear washes over us.  We are always in a state of Def Con....ready to fight, ready for battle.  I can only hope that we are truly ready when (and IF) epilepsy decides to strike.

Traveling

Vacations are a necessity for us.  And I'm not just talking about family vacations.  My husband and I take an "adults only" vacation every 2-3 years.  For us, it is a time when we can take off our "parent" hat and focus on being husband/wife and best friends.  After kids are grown and gone off on their own, it will be just us...and we want to be sure we are still well connected as a couple when that time comes.

Of course, when any parents travel (with or without kids), there are always worries.  When you have a child with epilepsy, that is definitely magnified!  Our trip was a little over a week after his latest seizure (see last blog).  It was not easy for me to get on that plane.  I struggled with myself...the mom/emotional side in me wanting to stay, in part in fear of what I had so recently seen and experienced.  Each time that side reared up, the other side of me was able to rationalize and calm the beast... to an extent.  In reality, I knew we needed this, and I found some comfort in the thought that God has a plan, and I need to trust in that plan, whatever it may be.  But, there were also things I needed to do in order to make this a successful trip.

One necessary piece that is needed to enjoy a vacation sans kids is knowing and being able to trust that my kiddos are in the best hands possible.  We have the blessing of having grandparents that watch the kids for us, so we know they are in loving and capable hands.

After we have kiddo-care arranged, its all about the prep work.  Making sure there are sufficient medications and supplements (Evan takes several, prescribed by his Naturopathic Doctor), writing out a schedule (medications, activities, bedtime routines, etc) to take guesswork out of it for the caregivers, ensuring there are medical releases signed, contact information (both for doctors, etc as well as for us), ensuring school knows who the primary contact will be while we are gone, and ensuring ample food for Evan's specialized diet is on hand.  I usually start on all of this at least a week in advance as I know I will think of things to add as the trip gets closer and as I move through my day.  You'd be surprised how many things we just do and don't really think about!

For this trip, since we were going to be out of the country, we also added an International plan to one of our cell phones so we could be contacted in the event of an emergency.  With this plan we also got unlimited texting, so were able to text here and there throughout the day if we wanted...and grandparents could get in touch with us as well.  ("Where are the hemp seeds?"...yup....I got that text and was honestly extremely happy because they could easily reach us if they needed ANYTHING!!)

We were fortunate to have WiFi in the condo we rented.  Well, I guess these days WiFi is just about everywhere, so maybe the word "fortunate" is becoming less applicable.  Pretty soon, if not "already" in some places, it will be expected!
But, I digress...
FaceTime!  This is where I was going with this.  Each morning, we would FaceTime (Skype would work, too) with the kids.  We were able to see they were doing well, talk to them before they started their day, make sure grandparents were surviving (is the wine supply holding up?).  At least for me, this allowed me to better enjoy my day and truly relax knowing all was going as it should at home.  Everything else I turned over to God.  At that point I had done all I could, the rest was in His loving hands.

The result...a successful and relaxing vacation!!

Raw Reality

I think, on some level, I have been avoiding writing this post for weeks.  I don't particularly like the emotions it is making me re-live and confront.  But, it is my reality, and I do feel like by sharing it may help others.
**Please note...this is a post into a deeper and darker part of my life with epilepsy.  If you are easily upset...you may want to skip this one.

       (*deep breath*)

Let me start by saying...I HATE SEIZURES!  And I am not a person who truly "hates" by nature....so for me to say that is saying quite a lot.

THE MOST RECENT HATE TRIGGER:
It was weeks ago that Evan had a cluster of breakthrough seizures...each worse than the last.  It was a nice evening that became chaotic quickly.  It started with just an eye twitch, then a large round of vomiting followed by inconsolable crying with no discoverable cause.  To make matters worse, we weren't home at the time.  Once we had calmed him and gotten us cleaned up, we thought we were in the clear, so we headed home.  For some very strange reason (intuition?), I decided to sit in the back with him.  We were nearly home when seizure #2 hit...this one started with more vomiting, and then his more "classic" seizure activity of facial tics, eyes fixed and dilated over one shoulder.  It ended before we got home, and before the 5 minute mark.  Once home, we stripped down.  For the second time that night we were both covered in vomit.  I took him upstairs and he proceeded to go into yet another seizure.  This time, no waiting...Diastat...STAT!!!  As if all of that wasn't bad enough...

The Diastat did work, his seizures slowed and eventually stopped.  But his breathing slowed as well.  He was now a limp shell, laying mostly naked on the floor in the rescue position.  His face started to become pale and his lips had a bluish hue to them.  This was new to us.  This was not normal.  In a panic we called 911.  As I called to Evan, trying to bring him to some level of consciousness, I agitated his chest with my hand to encourage deeper breathing.  It was helping...but his breathing was still extremely irregular and shallow.  If I stopped, so did he.  It seemed to take forever for everything...for his breathing to regulate, for the paramedics to get there, for it all to be over!!  I felt so helpless, so lost, so scared.  I didn't know what was going to happen or if he was going to be ok.  All I could do was pray, call to him and keep rubbing his chest...watching for signs of further distress.

Thankfully, his breathing did regulate.  The medics did come and assess him, and we did go into the ER as they were suspicious that he aspirated on his vomit at some point.  Sitting in the ER leaning on the rail of his hospital bed while he slept, I started to cry a bit.  Up until that point, I've never really asked God "Why?...Why him?...Why us?".  I feel some shame in admitting that I did question God and His plan.  But, I did, and then I simply prayed.  A nurse came in and I quickly pulled myself together as he was wheeled off for chest x-rays.

In the ER

In the car on the way home, I was nearly trembling as I felt all the emotions welling up just below the surface, and I silently prayed my husband wouldn't touch me or say anything caring as I knew the flood gates would open.  Now, having them open wasn't what I was afraid of.  I was exhausted, it was after 3am, and I wasn't sure I would have the strength to close those gates once they were opened.  I felt as though I was suffocating, and only imagined that it would be worse if those gates opened at that moment.  Honestly, I didn't cope with my pent up emotions until almost 24 hours later when I broke down in my husbands arms and just sobbed.  So much fear, sadness, and a dash of relief that Evan was ok came pouring out.  It was horrible and good at the same time.  An absolute juxtaposition of emotions.

THE POINT:
But...this all isn't the point of this post.

The point of this post is my hatred for epilepsy and seizures.  The point is the tireless battle we are fighting.  The fact that every moment of our lives is now lived with the added stress of epilepsy and all that goes along with that diagnosis.  Living in fear...praying that we don't someday wake up and find that SUDEP has taken our beloved child.

It was only a few days before Christmas that he last had seizure activity (small celebration...almost 4 months between seizures).  It was another cluster of seizures in the wee hours of the morning.  My husband heard strange noises coming from his room and insisted we needed to check on him.  I thought it was just his normal movements.  Reluctantly, I went in to his room and when I saw him, my hear stopped!  Panic entered my body.  His little body was limp, unresponsive, and face down in his mattress, laying on urine soaked sheets (he NEVER wets at night unless he has a seizure).  After I removed him from bed, he went into another seizure.  It terrifies me to this day (and brings tears to my eyes) to think what could have happened if my husband wasn't so insistent...if I had succeeded in dismissing the noises as "normal" and simply rolling over and going back to sleep.  I feel panic just writing this... panic and guilt!  I'm his MOM...I should have known!  The thought of what could have been keeps me up at night.  Every time I hear movement from his room my heart stops, my eyes grow wide, and I feel adrenaline and panic entering my veins as I listen intently to decipher if it is his normal moving in his sleep, or if there is a seizure-like "rhythm" to the movement.

HATE AND FEARS:
Parents of all children have fears.  And I know tragedy can strike anyone at any time.  But to have it thrown in your face, to brush with tragedy so frequently, for there to be a cause of all of this...THAT I HATE!  I hate feeling scared so much.  I hate that it makes me nervous to go out on a date with my husband, or to take a much needed and deserved vacation.  I hate that I feel compelled to have my phone with me at all times (literally) when he is not with me in case he has a seizure.  I hate feeling utterly helpless and unable to protect my own child from the terrors he faces, especially during a seizure.  I hate that this has already had such an impact on his short life.  I really hate that there are so many out there that are experiencing the same feelings.  I hate the fact that, whenever we want to get away for the weekend, that we have to think about where the nearest emergency services are...just in case!  I hate that we have had to turn down vacations with close friends if it was too far away from services.  I hate the medications and their laundry lists of side effects.  I hate that even neurologists can't give me straight answers to my deepest and biggest questions.

THE HATRED AND "DARK SIDE"
My heart aches for this all to just go away.  I hate that I feel hatred for something so deeply.  Even in Star Wars we are taught to fight feelings like hatred lest you turn to the "dark side".   But my son is being attacked.  I am his mom and I want to protect him like any "mama bear".  But, this attacker hides in the shadows, sits silently just watching and waiting to strike again.
Epilepsy, you are a COWARD and I truly HATE you!
I will fight you with my every breath.  I am throwing everything I can possibly find at you, and will continue to do so.  I will continue to seek out ways to destroy you.  I am fighting you with pharmaceuticals, with diet/nutrition, with naturopathic medicine.  Most importantly, I am fighting you with prayer and the grace of God.  And...I am NOT alone!

Superstitious?

I've never really considered myself a superstitious person.  Of course, when I was a kid, I would step over cracks in the sidewalk, when riding in the car I would hold my feet up over railroad tracks or hold my breath through a tunnel, and I'm sure several more.  But, I didn't really believe my mother's back would break if I happened to step on a crack.  It was just for the fun of it.  More something to do.  And, to be honest, I still sometimes step over cracks in the sidewalk for fun or hold my breath when going through a tunnel.

Of course, some things I would do not because I really believed anything bad would happen, but why tempt fate??  That philosophy has been taken to a new level with epilepsy.  I can't say how many times I have "knocked on wood" when talking about Evan and his epilepsy.  This is also true with the "s" word (ok....I can say it....seizure). Evan hasn't (knock on wood) had a seizure that we know of since the Monday before Christmas.  I was talking to my parents about it and would say things like "He hasn't had an "episode" since the one before Christmas", and I still rapped my knuckles on our wood table when saying it.  Do I truly believe my uttering the word will cause him to have one?  No, but...why tempt fate?

I think Michael Scott of The Office says it best.  "I'm not superstitious, but I'm a little stitious."