Foul Angry Language

3 yr old style. The bad words.

They come out in the most interesting ways and the most inopportune times.

While being hooked up to the leads for his EEG, R was beside himself. BE-SIDE! As I lay across his chest, pinning his arms below me, he kicked his legs and twisted as best he could, while crying and screaming,

"This is STUPID!"

"YOUR BUTT'S GETTING BIGGER!"

The EEG Tech didn't even comment or bat an eye to that last one. It sure made we look though! What the???

Turns out it's from the movie How to Train Your Dragon. Yeah thanks. The one line he keeps to repeat. Oh lord! Yesterday he told my brother in law his butt was getting bigger "and your mom's too!"

Star Wars Breakfast

Our boy W is completely enamored with everything Star Wars.

Head.

Over.

Heels.

It use to drive me bonkers...and sometimes still does...but it's not going away so with some guidance, I'll just go with it.

Yes, he's 5 yrs old.

NO, he hasn't seen the movies, nor will he be anytime soon. 10yrs old is the age for the movies...I think....maybe...we'll see.

So...to increase his love of all things Star Wars and cause I'm just nutty that way sometimes.....these pancake molds found their way to our house and were an absolute hit with the boys. The X Wing fighter was the pancake of choice. Poor old Darth Vader didn't get noticed at all! Poor fella. Guess, he's getting his dues, isn't he?!

Dairy Free Nachos

GFCF Nachos. Upside Down Chicken Nachos to be exact.

(Sorry Vegan friends! However, you will love the cheese and sour cream used.)

One boy loved these and the other ate about two bites. Which is no reflection of the meal, that's just how he rolls at dinner time. Throughout the day it's impossible to fill him up, yet come dinner, he's all hunger strike like.

So, the original recipe for the Upside Down Chicken Nachos came from here. A GF blog...wuhoo! I tweaked it just a bit to fit our eating regime.

Tasty dairy free, soy free, casein free cheese.

Salsa of choice.

"Sour Cream Recipe"

10 oz soft tofu and 1/2 cup water

1/2 cup raw cashews

1 TBSP lemon juice

1 tsp sea salt

1 tsp onion powder

1 TBSP dried chives

Place all in blender, except chives. Blend 1 min until silky smooth. Add the chives. Mix briefly or you'll have green sour cream! Thickens more if chilled.

Yummers!

Go Golfer Go!

When offered several activity choices for spring, W came up with golf. Golf! He does know he's 5yrs old doesn't he?! So, okay, I'll find golf lessons for little kiddos and they exist! I was pleasantly shocked.

After watching W today, we may have just found his niche. Driving range anyway. Maybe not the whole game...we haven't tried that yet, but he sure loved learning how to connect with the ball.

Bup happily cheered him on with Angry Birds in his hand (uh, yeah...what else?). Everytime W hit the ball, Bup would call out, "Good job W. W wins!" As cute as this was, W's face really shone when an adult walked by with a "Awesome job Buddy!" He said "I'm awesome!"

Awwww....you are W, you are.

*pls excuse the quality of these photos...I'm not that talented with an IPOD camera!*

VEEG Superstar

This little cotton top deserved his contraband yogurt snack more than words can say! Here R is freshly hooked up to the EEG electrodes. You can tell by his rosey cheeks that he had been crying and struggling for the previous hour. Goodness he was happy when we strolled down to the cafeteria to play and enjoy a treat!

Music Therapy. So fun! Bup said "No. I don't like instruments!" when the therapist first arrived, but as soon as she pulled out her guitar there was no stopping him. He loved it! And so did I! It was amazing to watch him shine.

Can you feel the love? Check out the look on his face! This was her last song and she made it up as he asked for a monster song...one that says Boo!

World Epilepsy Day - Get your Purple On!

Are you purpleicious today?

It's not too late!

Child Life Specialist

I heart "our" Child Life Specialist!
This role here at the ACH has been pivotal in making R's stay calmer and more interesting...not to forget gives me a little break now and then.
Such as right now as I have sneaked away to the Community Resource Centre for some computer time and then to the cafeteria for breakfast. I just can't stomach one more frozen WW meal this morning!
Anyway....Child Life Specialist.
This lovely gal visits us daily with fresh movies or other activities that R can enjoy in his bed. She was integral in having a PALS volunteer visit last night with Raven, the sweetest black lab puppy. R quite enjoyed having Raven sit in a chair beside his bed for a pet and a slobbery puppy kiss.
Even more exciting is the offer to work with us on an outpatient basis to help ease R's fears around having anything done to his face/head. ie: facewashing, applying lotion, etc.
Plus, in June R will be undergoing another brain MRI so the CLS is going to help prepare R for that with play therapy and medical kits etc. Wuhoo! My fears are already somewhat relieved knowing we can help R before the procedure.

Seizure Day!

Day 3 and the seizures have begun.
Wuhoo....in a warped sort of way. But the more activity the better while R is hooked up to the VEEG. The really fantastic part was the first seizure was witnessed by Dr. Neuro and he was able to view the EEG immediately and confirmed that this new seizure is stemming from the right side of the temporal lobe. A new spot for Bup.
Meds were stopped yesterday which explains why the seizures have begun.
So, here's hoping that tomorrow will provide enough information and we can be discharged on Friday.
Also...we're waiting to hear back from Cardiology as to if they can perform a heart ultrasound...since we're here anyway...just lying around in bed, playing Angry Birds, watching movies and such.

Big heartfelt thanks to the friends who visited R today! It was such a treat to have friends to visit with, new activities for Bup and fruit. Amen to fresh fruit!! Thank you, thank you, thank you!!!

Grrr...

It's been a doozy. Or as Bup would say "a rough day"
After holding him down amidst crying and struggling because he was trying to remove the electrodes from his cute little noggin tonight, finally getting him to sleep at 1130pm, no seizures yet and now no meds, a nurse (not ours either) chastises me for leaving him alone in the room while he sleeps for a few minutes break. Cause someone needs to be there if he seizes.
Well....I don't know if he seizes at night cause we sleep at the same time and if he does and I am there I will be asleep so it won't be documented anyway.
Grrrr....

The sun will come out tomorrow, right?

Neurophysiology Tomorrow!

{adorable Bup at 13 mths with his portable EEG}

Bright and early tomorrow morning...as in 7:45am....I will be softly singing lullabies as Bup serenely lays on the bed while 25 electrodes are glued to his head, then wrapped in a netting of stretchy cheese cloth and finally tucked into an adorable backpack.

We will then happily proceed to the Unit 3...oh, maybe after stopping at the cafeteria for a slice of contraband cheese and a diet coke (that's for me!).

Once in the Unit, our warm, kind and TSC aware Nurse will settle us in Bup's room. Here he will love his bed and never, ever want to get off. Except to use the bathroom of course. Bup will be so content to stay in bed for a week; happily watching TV, playing Angry Birds, reading books, and snuggling his "kiki". I will enjoy the quiet time at his bedside knitting, and chatting with my calm, adorable 3 yr old.

With in 2 days the Neuro team will have the information they need and R will be released as the star TSC patient who also happens to have a patient, positive and practical mother in tow.

Oh, what a relaxing all inclusive vacation we will have at the Alberta Children's Hospital!

*wish us luck!*

Leprechaun Trap

As St. Patrick's Day approaches, we're hoping to catch a tricky wee fellow!

The lure of cash and bright colors should catch the eye of the Irish bean counters.

Now, beware little green hatted men, because my W has already decided that should we catch a leprechaun....he will be kept in a jar and never fed. Never!

To construct the trap, a dollar store box, scrapbook paper, modge podge, and pretend moola. W cut, glued and glued until his body hurt and he had to rest on the couch while watching retro Inspector Gadget. Meanwhile, Sir R sat at the island pretending to eat his dinner. He was there a looong time and never did finish it all. It's a new theme at our house, but I digress...cause really R's refusal to eat has nothing to do with sneaky leprechauns.

The St. Patrick's Day Blues

St. Patrick's Day is coming.

There's green junk...um, I mean decorations everywhere.

I dislike St. Patrick's Day. My sister too.

As a kid, it was no big whoop. We're not Irish. Green beer? Whatever.

Plus, family tragedy happened to change our lives drastically over a St. Patrick's day some 20 yrs ago already. 20 yrs! Yes, that's a long time now, but it still resonates in our hearts. I've blogged before about losing my brother. It blows my mind that's it's 20 yrs already. Surreal. My brother was just 25 when he died suddenly, unexpectedly, and violently. ( Maybe one day I'll share some of that experience....but not today)

To add to this horrible anniversary date, it also fell upon the night of an old friend's birthday. I hope Q doesn't think of this every year on his birthday. How wrong. How sad.

So...my point to all this is: now that I have small children who recognize and look forward to ALL holidays (thank you school!) I will make a valiant effort to be a little more positive towards St. Patrick's Day. W has been talking about this greenness for days now.

Last year, my nephew asked to decorate for the wee folks and my sister was like "No. We don't celebrate St. Patrick's." Well! Talk about a wake up call for the two of us. Poor kids! It's not their fault or on their radar that an unknown uncle's tragic death haunts our St. Patrick's.

My commitment to St. Patrick's until Thursday...I think I can handle 4 days....is to blog green, craft green each day and even decorate the house a wee bit.

What about you? Do you celebrate St. Patrick's Day at all? How? Do share! I could use some ideas!

And with that plea, I leave you a little Irish blessing.

Happy Dreams Mommy

At bedtime W and I snuggled in his bed to read two books and then I sang a few of his favorite bedtime songs. Upon finishing, we just lay there quietly for a minute when he says,

"Mom, if you die. I'll keep one of your bones. Uh, yeah, your skull."

"What would you do with it W?"

"I would keep it in my room for show."

"Well, I'm not dying anytime soon so you'll have to wait."

"Good." Big smile.

"Happy dreams, Mommy. I love you...forever."

Maybe cabin fever has set in?

I think so!

Seizure Tracker

This on line tool is probably old news to those of you who live with seizures. Yet, today, 3 yrs since R started seizing, I bit the bullet and FINALLY signed up. Rather than keeping R's seizure activity in my head it'll be documented. When he was seizing on a "regular" basis; multiple daily, these were written down. Lately, I've kept them in my head because they are more random. Well, not anylonger.

		March, 2011 Su Mo Tu We Th Fr Sa 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31
< <<3> Click on dates to log seizure information. seizure activity appointments 3 Months>> Year>>

Rhett's profile Change Weight: 54 lbs. (as of March 07, 2011) Update Age: 3 year(s) 9 month(s) Change Current Medication(s):Trileptal 16ml daily Edit Schedule

The date for R's long stay video EEG (VEEG) is looming closer all the time. Just two weeks away. So, the more I have on paper the better.

There are moments when I second guess this whole hospital stay. "Really? Am I just exaggerating things and putting R through tests and trauma (cause it's VERY traumatic for him) for no real good reason. After all, his seizures are few in comparison to what they were before and they present in such a minor way. That's my heart speaking.

My head knows different. My head hates knowing.

On the plus side, my husband's parents are going to come and stay with W while R and I are in the hospital. Wuhoo!!! This is amazing to have that level of support and help. W will be in heaven with his beloved Gram-Oh -Doe for 5 whole days to himself!

Material Girl Love

What vintage are you? The Brigette drew me in. It "matches" the style of my wedding rings. Doesn't everyone pick a watch to compliment their rings?

Betty Page has inspired me for some time. Before her S&M days of course! I love everything about the 50's style. The red, red lips, full circle skirts, etc. Even the wiggle dresses. However those are for a different time. Right now it would be a Steele Magnolia's moment..."like two pigs fighten under a blanket." So, this little red number came home with me after several trips to the shop. Minus the crinoline. I've enough natural filling!

For you local readers, there is a fun little shop with a bit of an edge to it on 17th ave called Blame Betty. Definitely worth checking out!

Maybe one day this will grace my arm.

What are style is in your material heart today?

Contact Cards

These are on my radar lately. We've used them before as return address labels and now I'm dreaming about them for the contact card purpose.

Yes, yes, if one was so inclined creating contact cards on one's own printer is quite cost effective. One could even go so far as to say it would be rewarding to create and see those labor fruits.

However, this "one" is looking for easy. Plus, it seems that my creativity seems to be lacking as of late.

Another option is Vistaprint. Inexpensive. Less cute. Their sight seems slightly more difficult to maneuver or maybe that's just me.

Do you use contact cards as a mom to share with new friends rather than just whipping out your SMART phone to enter that new number? Did you create your own? If so, how? Would love to know the details!

Vegas Baby!

Fancy schmancy antique urinals at the Hoover Dam.
This is B's photography skills.

A couple of high rollin' gals playing Elvis penny slots. I won $13 and blew it all. Of course, the cowboy boot pina colada helped my gambling skills.

When you super tired and haven't eaten since breakfast, why not dine at a skull based mexican restaurant before the 10pm Blue Man Group show? Both were fantastic! Food and show. A must see. Bizarre hilarity at it's best!

Have you ever had a shark swim over your head? Mandalay Bay's Shark Reef is incredible. To be among sharks and a huge turtle, touching rays, standing nose to glass with massive jelly fish.....super cool as only Vegas can do.

Ever wonder why people are freaky and weird in the desert near Vegas and the Hoover Dam?

Electricity.

Living near all these power lines must have an effect. It weirded me out on the road to the Grand Canyon. It felt like an old war zone. Like people with three eyes would be working the cash register at the local store. My travel partners? They laughed at me and thought I should have three eyes!

Oh Margaritaville! How I love theee!

An order of nachos on night one cause I could eat food that we don't eat at home and look what happens!

Who says it's bigger in Texas? Las Vegas baby!

See? Desert view on the way to the Grand Canyon.

And this! This is what $20 in winnings from the penny slot machines can buy you. Deep fried heart attack on a table. Oreos, Twinkies, hot dogs and somewhere should be frozen bananas dipped in melted chocolate.

Never let my hubby loose with his slot machine winnings!

Just cause it's funny!

So cute at the Canyon.

The Grand Canyon west entrance is a definite must do. The Hualapai people were very kind and the canyon amazing. Overwhelming. While we were standing there on the edge, it was still hard to perceive the distance and vastness.

There ya have it!

A pictoral review of our adult getaway to Las Vegas. The craziness is good for the soul. Rejuvenating. Energizing and exhauting at the same time.