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."

Evan's M.A.D. Birthday

Birthdays are usually filled with parties, presents, cake and ice cream.  Evan expects nothing less.  Oh, he knows his cake is not like everyone else's...but that is not a reason not to make it just as special...if not more!

Oh....and this kid does NOT let you forget his birthday is coming!
The day before, it was: "When I wake up in the morning....I'm gonna be 7!!!!" (like every 20 minutes).
And he would say it at the most random times.  We would be talking about a school assignment, or he would be happily playing with cars, when all of a sudden I could feel his energy vibrating and knew what was coming..."HEY MOM!  When I wake up in the morning...I'm gonna be 7!!!"  Yup.  That was our day.  If ever there was a day we were ready for his bedtime, it was then.  Of course it was cute and endearing (the first 347 times), and each time we would smile and confirm his statement.  You couldn't help but smile at his absolute exuberance!

On that special day, he woke to a room filled with balloons.  Well, kind of.  He was so sleepy he came straight into our room (as is his routine) for some "good morning" snuggles and hugs and didn't even notice the balloons!  When he went back to his room to get dressed...SURPRISE!!!  All smiles from then on!  Unfortunately (or fortunately) it was a school day for him.  I packed him a special lunch with a simple "happy birthday" note, and sent him on his 7 year-old way.

To help make his day special, he got to pick what we had for dinner (pizza without the crust), and I made him a special desert that he also had at his party a few days later.  I threw out a bit of a prayer with this desert as I hadn't made it before and some of the previous deserts I had made didn't go over all too well.  This is a recipe I came across on Pinterest.  It sounded good, and looked good, and people had good things to say about it.  SO...jumped in, and grateful I did!!  WOW!  All of us commented on how it tasted extremely similar to pound cake.  Probably the closest thing he has had to any bread in years.  Very tasty...even by us in the family that are not on a specialized diet.

The simple and awesome recipe can be found here:
http://www.genaw.com/lowcarb/pound_cake.html

The entire recipe works out to about 6.3g net carbs
Out of this recipe, I made 10 cupcakes (so about .6g net carbs/cupcake)

After making the cupcakes...
1.  I cut off the top,

2.  Added some of his "fluff" (made a batch with berry flavored Stevia drops, and added in 4 blueberries and 2 strawberries for flavor, color and nutrition),

3.  And topped with 2 blueberries and one strawberry.

Super simple!!

With all the add-ons, the net carbs of this beautiful and delicious desert is a whopping 2g net carbs.

Definitely a desert we will be making again!!

Sick Days and M.A.D. Mac n' Cheese!

For the parents of a kid with epilepsy, sick is never good.  "Sick" puts us on edge, watching, waiting, wondering if, and more likely, when a seizure will strike.

Evan came down with a cold over the weekend.  Thankfully no seizure as a result...and we were throwing everything at it to help his body.  Vitamins, rest, humidifier, naturopathic remedies, extra fats, etc.  This time it worked...but there are no guarantees.  The feeling isn't so much that we won...but that we got lucky this time.

I sent him to school on Monday as he seemed to be on the upswing of his cold and doing relatively well.  When I was nearly to work, I got a call from the school that he was extremely tired and fell asleep on the bus on the way to school.  So, I flipped around to go pick him up.  On my way I got to thinking about how epilepsy changes sick days for me.  My older son is at the point where if he has to stay home from school sick (not high fever sick, but "just-not-well-enough-for-school" sick), I could go in to work for a while, or run an errand or two if needed.  He is old enough and quite capable of being left home alone for a while.  I got to thinking, that when Evan is that age, that will not likely be an option.  It is very possible I will always feel the need to be home with him when he is sick and more prone to seizures.  At the moment I thought this, it was a moment I felt yet another loss.  Partly for me, but mainly for him.  Being old enough to stay home alone has been a rite of passage for my older son.  Something Evan will likely not experience until he is much older.  I know there are potential devices and safety plans and work arounds that will likely allow him more freedom than what I was thinking at that moment, but in that moment I simply felt more loss.

The thoughts didn't last too long before I had a self-talk and reminded myself that we take what comes when it comes and we do our best.  We cannot predict what will happen in the future, so it is silly to spend too much time there dwelling and worrying.  We will adapt and figure it out.

Thankfully Evan's little body just needed a little extra rest as about an hour after he was home he was asking to go play outside.

That same day I had been craving a good, homemade baked mac n' cheese (oh so sinful!!)...so guess what was for dinner Monday?  Yup....nummy baked mac n' cheese.  Evan found out what I was planning and decided he wanted to participate...so I had to come up with a M.A.D.-friendly option on the fly.  I had decided to give cauliflower mac & cheese another shot.  The first time I tried this was years ago.  I followed some recipe and it did not go over well.  Honestly, I tasted it and couldn't blame him.  We haven't tried since.  I was glad I decided to give it another whirl as this one turned out much different.  I made it and served it, and he devoured it.  Success!!  We all had a taste...really not bad!!  I think we all could adapt and eat it as a healthier option to the recipe I had made for the rest of the family (which was the ooey, gooey carby noodley sinful one).

The recipe for the M.A.D. version is below.  Its really is pretty simple as well as fluid (so easy to tweak if ya want - get creative!!).  With some things it was "add a little of this" and "add a little of that".  If you tweak it more and find other yummy ways to prepare it, please let me know. I'm always open to trying new things.  I did fail to take pics of the process as I really wasn't sure how it would turn out, and only got a quick snapshot of the end result.  Sorry, its all I got, folks.

___________________________________________________________

Evan's M.A.D. Baked Mac n' Cheese:

• 1/2 c. steamed cauliflower (I used frozen florets thawed in the microwave)
• 1/2 c. sharp cheddar cheese (shredded...can also use whatever you have)
• heavy cream
• 1 T to 1/4 c. Alfredo sauce to taste (jar...I used Bertolli.  This is *OPTIONAL but helps flavor)
• mustard powder
• paprika
• turmeric
• crushed pork rinds

1.  Preheat oven to 350 degrees.

2.  Melt the cheese into the heavy cream.  I simplified this and put them into a glass liquid measuring cup and heated it to melting in the microwave.

3.  Add in the Alfredo sauce, mustard powder, paprika, and turmeric into the melty cheese and stir well to mix.  Taste and adjust balances as needed. 

4.  Crush, smash, or "rice" the cauliflower.  Be sure its well steamed before you do this.  Mine was a bit under done and it made this process more difficult than necessary.

5.  Mix cheesy sauce into cauliflower and pour into a small ramekin or other oven-safe dish.  Sprinkle crushed pork rinds on top and bake for 20 minutes.

Recipe makes 1 serving.

Net Carbs: 4g with the 1/4c Alfredo sauce.  If you use less sauce, or a different brand, this could change.  Bertolli is 2g/net carbs for the 1/4c.

I.E.P. Rollercoaster

I attended Evan's IEP yesterday.  I am SO thankful for the schools here and the team that is working with Evan.  They are truly committed to seeing him succeed, and always grateful for input, information, and suggestions from me.  I have heard many parents complain about their schools, and have heard some real horror stories about the battles some parents have had to go through to get proper services and supports for their children.  I am relieved that, so far, I have not had those experiences.

That being said....this IEP was a bit difficult for me.  They did his 3-year testing to show that he still qualified for services which included testing in many areas.  Speech, IQ, math, reading, writing, comprehension, cognition, etc.  Overall, I have always seen Evan as a generally typically-developing kiddo.  I know he has a speech delay and is a bit delayed socially, but never really had it all laid out on paper as I experienced yesterday.

On the Wechsler IQ testing, Evan scored a 73, well below average.  Many of his testing scores came out with similar results.  My heart sank a bit.  I've never seen him as being so far below average!  I wasn't prepared for that, and admit that there was a part of me that temporarily felt defeated (and guilty).  But, then a voice inside me reminded me of what I have felt for a while now.  Evan is NOT abnormal.  He is simply developing at the pace Evan is supposed to develop at.  Yes, medications have played a role in his delays, and I can feel guilty about that...but, the fact is, HE IS DEVELOPING!  He is continually learning and growing.  Who cares if its not at the same rate that Mr. Wechsler thinks he should be developing at (ok...I really don't know if there is a Mr. Wechsler...that is just an assumption of mine)!

Then was the reinforcing upswing of this rollercoaster.  All the evidence of how hard he has worked and how far he has come.  He has met, and in many cases, exceeded the IEP goals set last year.  At the beginning of the year he was barely writing the letters of his name...he now copies full sentences and can write all letters of the alphabet.  At the beginning of the year he couldn't write any numbers...he can now write numbers 1-20.  Heck, at the beginning of the year he wasn't recognizing numbers beyond 5!  He can now count to 100.  He is starting to read!  These are just a few of the examples the team gave me, reinforcing that HE IS DEVELOPING!  More importantly...he will continue to develop as God has intended for Evan.

I am refusing to see him as a test score, and encourage all parents to do the same.  Those do not take into account what we know about our kiddos as their mom.  Test scores cannot define him or anyone else, and cannot predict what a person can do with their life.  Set high standards for your kids and watch them grow!  Allow them to  explore their limits, don't limit them.  Ok...maybe its ok to limit them when it comes to some things...too much ice cream isn't good for anyone!  

We have set the bar high again with his IEP this year, as we did last year.  I look forward to seeing him surpass those goals by March 2016.

Mommy Fears...and why I can't enjoy sleeping in

There are many "mommy fears".  Some are justified, some are irrational, and some (ok, many) we can't explain.  There are the ones we have when our kid is doing something "dangerous" such as riding a skateboard down the driveway (fully geared...so maybe not completely dangerous), and we bite our tongue, hold our breath and maybe even look away...hoping and praying they won't fall.  These are the fears all mommies have from time to time.

Then there are the fears I never anticipated I would have, and didn't have, before epilepsy.

Most mornings Evan is awake between 6:30am and 7:00am.  On occasion he will sleep longer, but that isn't too often.  Before seizures, having a morning the kids didn't wake up before 7:00 am was seen as a blessing.  A gift, of sorts, from the universe..."You are such hard-working parents, you deserve to sleep in!" says the Universe.  "If I must." I would reply.  

This morning I woke up to my alarm and not a 6 year old poking me in the face.  Hmmmm...Evan must have been tired and needed extra sleep.  As we know, sleep is good for our kiddos with epilepsy, so I let him sleep.  I showered and got ready for the day.  7:30am came and went.  With each passing minute, I had to resist the urge to go in and ensure he was ok.  Side-note...he is a light sleeper, so just going in to check on him would cause him to wake up, thus my internal struggle!  I argued with myself..."what if something is wrong?!?"..."but if he is sleeping, his body must need sleep!  Let him rest!"  After about 20 minutes of fretting and worrying and arguing with myself, I couldn't stand it any longer and I went in.  He raised his sleepy head to look at me...a sleepy grin crossed his face as he said "mornin' mama".  My heart warmed and my brow released as I let out a sign and said "good morning" and smiled back.

Since epilepsy, I no longer can enjoy a morning of "sleeping in".  I still catch myself at times, lying to myself..."Oh, I just wish they would sleep in!!" but, deep down, I know that it only brings worry that increases with every passing minute.