Reindeer Games

...and in other news....

It's Epi-member Folks!
That's right. Bust out your purple attire, put on your brain-face, and raise some Epilepsy Awareness.

Rhett's meds are keeping the Seizure Monsters at bay. Rarely a breakthrough seizure. Yes!

Always, the concern of those monsters stalking him are in the back of our mind. While on the forefront are the effects of those seizures. The delays, the struggles, etc that Rhett works to overcome everyday.

This is why awareness is so important. Overcoming, fitting in, achieving, and showing people that there are reasons making friends, playing with others, and  following directions (to share a mere glimpse) are challenging.

Awareness was shown to me on a different level yesterday by a friend of my sister's. This lady is amazing. I would say her Epilepsy is severe. Her seizures are still uncontrolled and have affected her in many different ways, yet she is the most positive, inspiring, happy person. For example, physical mobility is becoming more limited yet she walked 5k....using a walker....this week. 5k people!!! Woot woot Ms. TO!

....and in other news, there is a bit of venting wanting to burst from my fingers.
Our sweet, "Sheldon-esque" Warner spent a "fun" afternoon at a new friend's. This 3 hr playdate included 3 hrs of playing Halo, and eating ice cream, cheese, crackers, meat and fruit punch.
Gahhh!!!! This is the where the ADHD monster steps in. Shall we liken it to Animal of the Muppets? How about Animal crossed with Sheldon from Big Bang Theory. That's bang on!



If there was a way to provide Warner with a one day effective detox, that would eliminate the extreme reactions those three hours have created, I'm in. If only......

Alone Time

Oh the silence. Other than the sound of a book I am listening to on Audible. The children and my sweet husband are out for the evening to invest the boys into Beavers and Cubs.

I love, love, looooove being home alone. A little down time, a little silence, a little adult noise. Ahem, the dishwasher and the IPHONE.  It's peaceful. The sky is dark and so is the house.

Our life here at RWB has revolved around the boys, our family's work'n'dad's home schedule, and just day to day life. The unexciting and definitely not mundane. We are homeschooling both boys, continuing with our work away & solo parenting schedule, friends, and  lego  lifestyle.

Recently, blogging has been inching back into the edges of my mind again. I have missed you and missed blogging.  So here I am, writing, while listening to an audio book, in the dark and enjoying this small process of re-opening the blog.

Until next time.....

Today's Motto

If they don't offer....don't ask. 

It's summer time and the boys have been blessed to spend this week's mornings at Lego Camp. 

They are living it! 

As of yesterday, and of course that opinion is subject to change....without notice. 

Today's motto stems from morning drop off as I ASKED the instructor ( whom we have had on diff occasions) how it went yesterday.  

Reply: 

(Pause) 

"OK. "

(pause)

"There were some tense moments."

*sinking...sinking* Ugh. 

Well. 

He didn't offer up any further info & I'm not asking (yet) as Warner and Rhett are happy, and all looked well at the end of end of the day yesterday......so  I'm not asking. ;)

TSC Interview

On International TSC Day, May 15th, I had the honor of interviewing two individuals who are touched by TSC, heart and soul.

I loved it! The whole interview and could have talked for much longer than 10 minutes.

Hopefully, the audio will be available soon so that I can share with you.

Until then, TSC month is coming to a close. Yes, May is wrapping up. So I shall leave you with this fact:

Also, a picture of this TSC Cutie, our Rhett, who happens to be 6yrs now. Six years spent dealing with the ups & downs of Tuberous Sclerosis.

Be a Hero

All our Blue Day for TSC plans have been shelved as the boys and I are ill with a virus.

So a little shout out to our HERO friends who wore blue today for Rhett, took the time to teach their kiddos how to pronounce Tuberous Sclerosis and are doing their part to increase awareness.
xoxo

Tuberous Sclerosis Blue

The blog has been a bit quiet...but that's about to change...and it's not that TS has been forgotten. Goodness no!How could I forget my luvbug Rhett and "The Maybe Disease" he lives with.
 However, I've been posting TS facts on my facebook page, trying that avenue for a change.

Here I return. Home. The blog feels like "home" and I like that.

So....have you done anything to accentuate your TSC Blue?
Read a little?  The TS Alliance...our American friends...have heaps of TS info.
Pinned a little? Pinterest is a wealth of information on many levels...including TS. Woot! Woot!
Lit your home? Your city? Shout out to Calgary and Toronto for turning on a blue light or two. The Langevine bridge and CN Tower are going blue on the 15th.

TSC Blue Langevine Bridge in Calgary.

 Medicine Hat...I shout out to you too. The mayor has declared May 15th as Global TSC Day in Medicine Hat. Woot! Woot!

It's all these "little things", that increase awareness and get people talking. Talking works. Talking means people are sharing...people are learning...and people take notice. That's all it takes. One big chat for a giant step forward.

By the way, stay tuned here....for an exciting Tuberous Sclerosis Surprise on Monday!

PS: I am SO excited! Click here for one little hint.

Blue

Blue is the "signature color" ( read that with a southern accent) of Tuberous Sclerosis.

The Maybe Disease that our Bup lives with.

And May TSC month.

And blue is the Color of Rhett's beautiful eyes....of which one has a tumor close to the centre of the retina, thanks to TSC.....but they are a beautiful blue, filled with mischief and love.

Little Monster

Seizure night tonight.
Just one.
In bed, snuggled up & reading a Berenstain Bears book when that limp arm & hand took over. Not sure why....so it's time to pay a little extra attention.

Hopefully, tonight's "wiggly hand" is just a blip...a subtle reminder.

Monday Madness

Physio this morning for me.

OT this afternoon for Warner.

Yoga right now for Warner.

Um....when does the Schooling take place?
Hopefully, an hour or so will take place tonight after dinner.

What about Rhett today? Well, he enjoyed time outdoors on the trampoline and bike riding, before the flurries set in as well as reading Berenstain Bears with me and is complaining that today is the worst day of his life due to the snow!

Are your Mondays mad?

If you are a homeschooler, do you have a daily schedule you adhere too?

The Visitor

Intense isn't he?

This fellow flew into our back yard and perched on that skinny branch, in the spring snowstorm, beside the trampoline.

A Great Grey? Maybe. Definitely not a Great Horned Owl.

Whomever he is, he is magnificent. Intimidating. Amazing to watch. HUGE. Seriously, he's as big as a Bald Eagle.

Hopefully, he'll be back tomorrow and we can continue our staring contest.

Guess who won?

By the way, Mr.Wise is looking backwards towards the camera. Amazing...wish I had that range of motion....just to keep an eye on my boys!

Tasty Tuesday - Clean Eating Dinner

Tosca Reno first came into our life via the Eat Clean for Families cookbook.
It's awesome!

Tonight I cleaned up our dinner with two Clean Eating recipes.
Quinoa & Cranberries - Super Yum!
CE Porkchops
Cucumber Salad

Oh Yummers!
I could eat the Quinoa dish all. day.

Of course, we had to "force" Rhett to eat it. That cutie does not like to try new foods and it drives me bonkers. But that's another post.

Quinoa & Cranberries
1 1/2 cup quinoa - soak in metal seive/strainer while prepping, then rinse well with cold water
1/2 cup raw almonds
2 1/2 cups water
1 1/2 cup almond milk
1/2 cup dried cranberries
1 tsp lemon zest
1 tsp pumpkin pie spice

Place almonds in food processor & whiz until fine. Transfer to small bowl & set aside.
Place quinoa in water & bring to a boil. Reduce heat & simmer, covered, for several minutes. Add almonds, almond milk, cranberries, lemon zest and pumpkin pie spice. Let mixture cook over low heat, stirring until it thickens. Remove from heat, let sit covered for a few minutes. Use a fork to fluff grains.

CE Porkchops
4 porkchops - defrost and trim fat.
1/4 tsp sea salt
1/2 tsp coarse pepper
1/3 cup chicken broth
1 1/2 TBsp dijon mustard
1/3 almond milk

Lightly spray skillet with non stick spray. On med-high heat add pork chops, sprinkle with salt & pepper. Flash brown chops. 5 min each side. Remove and place in warmed oven to keep warm.
Add broth, mustard and milk to skillet. Simmer 7 min. Thicken and spoon over chops.

Do you have a favorite clean eating recipe? Light dinner choice?

Sneaky Sleeper

Look who snuck into my bed.
Just crawled right in, made himself at home.

Sneaky Sleeper!

Look at that face. So sweet....except....those facial angiofibromas that just keep growing & spreading. Not freckles on his nose & cheeks & chin, skin tumors. There's a bad one right below his bottom lash line.
Ugh.

Regardless, I'm grateful because the TS is "stable" right now. As stable as it can be.

So, I think I'll just stay snuggled up with this boy....listen to his sleepy breathing, enjoy his stillness....and be grateful.

It's a Weighty Issue - Weighty Wednesdays

This is a biggy.
In SO many ways.....not just my butt! ;)

In the effort to be transparent and real and committed I'm going to chronicle my weight loss and health gain journey.

And success. There must be success!!!

As I break out in hives from even writing this little bit, my stomach is both sinking & jumping into my throat at the same .

In the past, I have not been good at this....this weight loss, get healthy business.

I like to eat. A lot. Not often, yet A LOT.

This past year I have lost 30lbs and have another 70lbs to go.

So, here's hoping that with A LOT of perseverance, clean eating, and activity I am successful.

Goal #1: 190
Current: 250lbs

Tasty Tuesday

In an attempt to provide the boys ( who am I kidding? Me to!), a healthy treat, I begged a sweet friend to share her super oatmeal cookie recipe.

Miss Ell's Cookies
1 cup oatmeal
2 mashed bananas

Mix & bake for 15 min at 350 degrees.

The beauty of these is that you can add whatever your taste buds desire.
For example, tonight I added vanilla & chocolate chips.

"Oh that's easy! It's a cuppa, cuppa, cuppa."
Dolly Parton from Steele Magnolias

The Wild Life

Living in the foothills of the Rockies is a blessing to our family. We are living the dream. I have wanted to live in the mountains for YEARS and here we are. Living that dream!

With living in the woods, there comes risks as well.
 Which is also true of living in urban areas, right?

Deer in our backyard.

"Maisy" the Moose visits too.

Are you wondering what that blue block is? It's a salt block. There was one here when we moved in so we kept up the habit, however that will be changing as of tomorrow morning. 

Do you see the white pole by the salt block? That is a deer feeder which we have NEVER filled and I think is just crazy! By the way, our local general store sells rolled oats soaked in molasses specifically for feeding deer. Nuts I say! 

Deer need to remain dependant on nature, not on humans.

The birds are beautiful.

Sweet little Chick-a-dee.

Yes, we feed the birds....for now. It's a spoken rule in our community that bird feeders are put away in April as they act as an appetizer for bears. So, our wee feathered friends will be on their own soon.

Also attracting deer means attracting cougars. This is our next backyard visitor. I have not snapped a picture of the "kitty" as he remains elusive which is scary. I would rather see this amazing predator than have him lurking in our woods and stealing the next door neighbors' dogs. Two big dogs, one on either side of us, have been taken within three weeks.

image

Tonight our next door neighbor saw the cat in their backyard during daylight hours.Just leisurely walking across the yard. Probably checking to see if dinner was available. Yikers!

When Mrs. A telephoned to report the sighting, goose bumps ran up and down my whole body. Still gives me shivers.

Sooooo.......

Reported to Fish & Wildlife....check! 

Backyard flood lights on....check!

Dog in doors....check!

Boys in bed and safe....double check!!

A little freaked out....check! 

Hmmm....cougars are leary of skunks? Maybe we should raise skunks! I have a friend in the city who traps and releases skunks. Maybe Miss T could bring them here!

image

Click the above image link & read the story. It cracks me up. This was taken in Waterton National Park and that little skunk did scare the cougar away!

Spring in the Rocky Mtn Foothills

You know it's Spring in the Rockies when....

• three pairs of socks... including one of Dad's woolies... keep little feet dry & warm on the trampoline.
• a child makes a frost angel on the trampoline.....and gets really mad when his brother wrecks it.
• you just take the bikes out of the barn....and it SNOWS the next day.

Spring Snow April 7th

What does Spring look like where you live?

image from Pinterest

A Brother's Heart

Today Warner was sitting on my knee as I viewed this blog. He laughed at Rhett's baby pic, but then turned away when he saw the pictures from surgery. Poor fella still can't (won't) look at them.

When Rhett was hospitalized for neuro surgery, Warner went camping with sweet friends, family-friends. We kept in daily touch which included sending pics of Rhett. Which Warner would not look at then either. It was just too much for him. Even when he returned and Rhett came home from hospital, it took a few hours for Warner to be in the same room as Rhett or look at him.

Camping "cousins".

Remember....Warner was still 5yrs old at the time.  It's hard for us parents & adults to see Rhett hurting and scarred, let alone a little boy.

Yet, it still surprised me today when he couldn't look at these pics....and was a good reminder that Rhett's journey affects Warner too.

Brothers

Rhett's Journey

For the new RWB & Me readers, you may not know Rhett's story. His journey with Epilepsy. 
So here is the "Reader's Digest" version, if you will.

Rhett began life at 8lbs 13oz. My tiny baby. I was shocked at how little he was. Seriously.
He was healthy, other than a few small glitches, such as being tongue-tied, a weird heart beat, and a couple other "manly" issues. Adorable, squishy faced sweetness.

Rhett's first snuggle with Mommy.

Brand new Rhett & Daddy.

Our littlest one, grew and grew and charmed us with his quiet, loveable nature. Rhett met developmental milestones by the text book, other than his growth, which took off in true Gertsma style. When the seizures began at 8 months old, we were completely shocked and unprepared as it seemed so out of the ordinary and unbelievable, that this perfect baby boy could be having seizures. 

Rhett 8 months old.

After the unthinkable began, those Seizure Monsters reared their ugly heads, our new normal of hospital stays, tests, EEG's, MRI's, meds, explanations, searching for answers and a lot of fear, tears, and praying began.

Rhett's first ambulatory EEG.

At 15 months, an additional diagnosis to Epilepsy was given. Rhett has TSC. Tuberous Sclerosis. And so another journey begins. Education ourselves and everyone on our path, about TSC. Genetic testing for our immediate family, more tests for Rhett and more results. 

Rhett has all the major markers for TSC. Tubers (benign tumors) in his brain, right eye, heart, right kidney, facial angiofibromas (skin tumors on his face), those little fall down ears indicate kidney problems, the white ash marks all over his body, the serious, not super smiley nature of TS babes, and on and on and on. More of the unthinkable. More fears, tears, and learning.

Rhett 15 months.

The Seizure Journey continues as meds are tweaked and tried. Those pesky seizures keep rearing their ugly faces. Knocking our Bup down. Still coming. Trileptal & Keppra are a part of Rhett's daily routine. But the seizures keep coming and the Keppra adds sadness and unconsolable tantrums, sadness really. so eventually Keppra is switched out and Topamax is added, much to our concerns. There's a reason it's called "Dope-a-max", it sedates, it heats up and it can affect vision. Thankfully it is a small doseage and so far no side effects. Each increase in Trileptal always brought side effects for a few days....clumsiness mainly...and then it would go away. We have been very lucky. 

Eventually, a new seizure shows and although to the unknowing it seems minor as this new temporal seizure would just put Rhett on "pause" shall we say, it is wicked and left unchecked will cause more developmental delays, eventually effecting memory and development. 

Meds are not working to stop this quiet monster. Not well enough anyhow. And so during one LVEEG (long stay video EEG), our sweet Doc Neuro explains that Neuro-surgery is the best option. I will always remember that day. That hospital stay with our adorable, three year old. How does a parent absorb this? Let alone a three year old. So now we prepare for another chapter in this Epilepsy Journey, wrought with fear, facing the most difficult decision of our little boy's life.

Bup ICU

Bup in ICU.

Rhett had his right Temporal Lobe and Hypocampus removed. He came through surgery and recovery beautifully. 

We have never shed so many tears of fear and gratitude. Never has Rhett reaching for me meant so much as it did that day in ICU. 

Rhett recovering.

Rhett's sweet preschool teachers sent him a balloon bouquet and a group of lovely ladies in a near by city gifted Rhett with a handmade quilt. These small gestures showed us love and hearts that brought tears and smiles to Rhett, Brad and I. 

Taken 6 weeks after surgery.

And now here we are almost two years post surgery, with new growth and development, meds still holding those seizure monsters at bay, barely at times, but still at bay. Yes the surgery was successful. Rhett is a different little guy since surgery. He's happier, More outgoing. Friendly. And was NONE of that prior to. But since Rhett's brain is riddled with tumors, seizures will always be a part of his life as will meds, tests, dealing with fine motor, gross motor, speech and other delays.etc, 

As difficult as this Seizure Journey has been, I know we are blessed. We are blessed that Rhett is doing as well as he is. We are blessed to have the Neuro team we have. We are blessed to have others in our journey that care for us, lift us up and make us laugh. But most of all, we are blessed to have Rhett. 

Rhett Kindergarten 

Purple Day

There are so many proud moments from Purple Day.

First...Warner explaining to a new friend why he there is a purple brain on his t shirt. As only a 7yr old brother can explain about "tricky brains" and seizures.

Second....to sit at the back of the classroom & witness my sweet, usually shy 5yr old stand beside his teacher....well, lean on her knees & sometimes melt into her......witness Rhett sharing why he has a purple brain on his tshirt, what the purple world pin is for, "tricky brain", "wiggly hand", purple means Epilepsy"....and hand out purple balloons to his classmates.

A surreal moment.
A moment filled with pride.
A moment filled with the heartache that its just wrong that this is Rhett's reality.
A moment filled with gratitude that he can share with his Kinder class.
A moment that "warms my heart"

Spread the Purple Love!
Have you been over to Danielle, Heather & Christy's blogs?

Check out the Purple Mommas' blog list on the side bar. It's growing!

Epilepsy at our house....

is in full Purple mode today! 

Purple Brothers!
Rhett is our boy who defends himself from the Seizure Monsters everyday....the cutie with the glasses and crooked smile.

And me! Margo. With Luscious Lavender in my hair.

More to come tonight. Details. Pics. and Purple Boy love!

Have you seen how cute Danielle & Bristel are? Or Christy?

Epilepsy at our house....
(in days gone by) looked like this little guy zonked in the back seat after the exhausting job of hooking up his first portable EEG.

 This appointment was our first time time in Emerg for seizures. That night the seizures escalated from 1 to 24 seizures in twelve hours. 

Our sweet little Bup. Just shy of a year old.  

This was such a scary time. Witnessing our baby seize and having no idea what, why, and the side effects. 

Cute as a button. Those blue eyes and sweet cheeks.

Go visit the other Purple Mommas please. They will have facts and hearts to share.

Epilepsy in our house.....
is 30 heart stopping seconds that feels like a lifetime.

Read about Heather and Christy and Danielle. These Purple Mommas are a touching group of gals. Get a glimpse of cute Aidan's blue eyes, read a touching story about strangers becoming new friends, and help another little cutie earn a new van through votes. Go for it. I dare ya!

Epilepsy in our house.....looks like a "wiggly hand" seizure.

Rhett's right arm goes limp & he is unable to use it.  This is Rhett's "wiggly hand seizure" as he has deemed it.

When the meds weren't working, his whole right side would go limp, his head would fall to his chest, he would sound like he was snoring, would not be able to talk & they would knock him down.

Another fact of the day, you ask? Well, click on over here to see what Heather has to say.

Remember the lovely Purple Mommas on the side bar.  They have lots of interesting Purple tidbits to share too! 

Until tomorrow, Purple on my friends, Purple on!

Epilepsy in our house looks like taking two anti-seizure meds twice daily and wondering... why does our health insurance, Blue Cross, only cover one med?

Topamax. Which Rhett takes very little of, therefore it costs very little.

The Trileptal? He's at the top of the range based on his weight and it just barely keeps the seizure monsters at bay. We can NEVER be late with it or forget as the seizures will start within the morning.
Anyway....short story long, Trileptal is NOT covered.

And yes, we have it much, much better than our American friends when it comes to coverage and health care (just my opinion....) but it's still not perfect.

Would you like to learn more about Epilepsy? Click here.
Or look to the sidebar where all us Purple Mommas' blog links are.

It's a Purple Partay!

In an effort to rock the nation on  Purple Day, fellow bloggers: Heather, Christy, Danielle and I are joining up on Tuesday, March 26th. 

We will be sharing our stories, pictures, and our Purple hearts.  

As Purple is the color of Epilepsy, won't you join us on this Purple Day as we share all things purple and all things Epilepsy. It is our hope to increase awareness, break down barriers, share our hearts, our stories, our hopes and yes, there may even be a little bit of sadness.

As you know, Rhett lives with Epilepsy. He is fortunate right now to being doing very well. The twice daily meds are keeping the Seizure Monsters at bay....barely...but still at bay. Knowing Rhett, you know the journey he has travelled in his 5yrs. We are very grateful that Rhett's seizures are under control, but that was not always the case and is not reality for others, many others. 

Did you know that 1/3 of people with Epilepsy live with uncontrolled seizures? Are you aware that many people do not know what to do if a person seizes? Or the different types of seizures... what they look like? If you are local to southern Alberta, please visit the Be Like Jelly link on my blog.  There is much education to do!

 So please, for Rhett and all our Epilepsy Journey Friends, stand tall and recognize Purple Day with us.

1. Join me, Heather, Christy,and Danielle as we host a blog link up on Tuesday. Share your Epilepsy story, picture of your child, message of support to families battling Epilepsy and come post it on any of our four blogs on Tuesday. (The links will automatically be shared on all four blogs when you link to one) The more people who join this conversation, the more of a difference we make.

2. Share this post with others so they can join us.

3. Wear purple on Tuesday. Take a picture and email someone or put it on Facebook that we’re standing together. When you wear purple make sure you able to tell people why. I’ll be posting one Epilespy fact each day until Tuesday – I’d love for you to add yours in the comments.

Spread the word. Spread the PURPLE Love.