Tuesday, June 28, 2011

Ready 4 Anything Around Here!

It is impossible to fully appreciate the divinity of carbohydrates until one has spent time without them.
- Tammy Burton, June 28, 2011

Not that I have totally given up carbs in solidarity with my daughter, a practically Born Again Child since Saturday. My Dr. Pepper is my main carb/sugar intake now. All mothers need fuel and fixes! But my household is pretty much eating the same menu, with appropriate quantity and substitution shifting. I LOVE IT! Yes, from the time I kiss the kids goodnight, to the time that I get ready for bed, I am playing Lab Rat, practically 'playing with' a table full of food selections, and concocting the precise food portions or rather potions to keep Desty's ketones at a count of 160 morning and night.

This morning with my girl safely on her way to Rocky Mountain Day Camp (the most ROCKIN' DAY CAMP in the ANY universe) and my sickly Benny-boy at my side, Buck surprised me with gooey rich Brownie Mix atop Pancakes! Pure Heaven in my mouth. Thus, the comment above was born ;-)

Directly after this feast of divine manifestation via chocolate, we drove to the doctor. Let me clarify here....One day before Desty's admission to the hospital, Benny spiked a fever and couldn't keep anything down. This virus lasted four days. Then he had six days of health. Last night he became sick again with a completely different set of symptoms. Step Throat with a side of Parotitis, please.
REENACTMENT For Entertainment Purposes
My healthy child will pull in the driveway at any moment, and I will simultaneously scream, "MASK!!!" in a probable fruitless attempt to save Desty from Strep.

Antibiotics STAT!

Oh, for more comic relief from my day...
NURSE: Who takes care of him?
ME: III do...I am his MOM.
NURSE::  How do you take his temperature?
Me:  With a thermometer, by mouth. 
Nurse Ratched really had to think this through.

Saturday, June 25, 2011

Hope and Love

I believe this Diet is going to be my daughter's recipe for Health and Happiness. And I'm knocking on wood right now, just to be safe, but I am filed with hope. Hope, now that is something astronomical for a mother of a child with a progressive epilepsy disorder to feel. I feel a bit Obama-ish, with my "HOPE" mantra, but today I am officially declaring:
Move Over, Mr. President!...

Destiny is the perfect "Keto Kid"! She loves fatty foods, and is just happy (98% of the time) to eat anything that I ask. I think she really understands that yummy food is now her medicine, and MAYBE she won't have seizures after awhile. She is definitely excited that maybe she'll get to ride her bike to the park again.

And the food is getting better! A definite learning curve for her mama that would much rather be hiking, at the park, playing games, pretty much anything than preparing meals. For breakfast she had her favorite blueberries (only 11grams though), 9 grams of bacon, 6 grams of egg (= to one measly bite! ;-), 8 grams of butter straight, 57 grams of what I call Strawberry Yogurt (I mixed Crystal Light with the Heavy Whipping Cream - she LOVED it!!!), and a 44 gram creamsicle (Heavy Whipping Cream and very expensive chocolate sugar-free drops frozen on a Popsicle stick), so now she can have a meal without cream later.

For Snack, she got 13 grams of celery, 10 grams of peanut butter, so we masterfully mixed as much butter as could fit with the peanut butter and heaped it on the little piece of celery. It is Delicious!

Destiny has to eat an insane amount of butter each day and much of the time it's its own side. I think back and Laugh...Less than a year ago, I would totally freak out because she'd sneak big spoonfuls straight from the butter bucket. First, I thought it plain nasty, but more than that, I assumed it would cause cardiac arrest or seizures! Oh, hindsight! HeeHeeHee!!
"Eat your butter, Honey!" I say with a smile.
Today is actually Day Four on the "Magic Food", and I wish you could see her eyes, peeps! - Magically clear and Happy! Almost...(And my deepest hope is that when we are allowed to decrease her meds, there will be no "Almost" I look at her and I cry. LOL! They're used to me crying happy tears! No seizures today - Zilch. Again, knocking on wood...

My good friend led me to a movie called, "First, Do No Harm" starring Meryl Streep. Now, the story behind this movie is worth reading. As I watched the following clips from "First, Do No Harm" I sobbed. It is not Destiny's story, by any means, but some of it is all too familiar. I begged neurology to do an EEG on Desty two/three years ago when she was having febrile seizures, increasing moments of staring, clumsiness, slow response, etc. I was repeated told she'd grow out of it, or it's just her flaky personality. Well, guess what experts? My baby grew into it! And now, oops, my princess has a potentially devastating syndrome. Thanks docs! IF, IF, all day long...moving forward!

Grab the Kleenex Box!

In this next clip, when Robbie says quietly, "I'm excited, Mommy" I see Desty (on bad days)...My heart bleeds ;-(

And finally...

I can only Hope with all of my Might, and Love in my Heart, that this new Lifestyle is the medicine that finally works! With that said, I have to go set up for dinner!

Friday, June 24, 2011

The Beginnings of a Keto Mom

"This is Sad, and Sick, and Wrong. This is Destiny's lunch for tomorrow. It's chicken, cheese and olive oil...Tasty!"
Home from the hospital, we prepped Desty's meals for tomorrow.  I tried my best to make up for this grotesque entree buy buying Popsicle Molds, filling them with her 46grams of 40% Heavy Whipping Cream and fake sweetener, and freezing them for Breakfast and Snack.

Wednesday, June 22, 2011

We Have Ketones

Forced, weary smile.

First, check out this video from Monday, when she was probably the healthiest child in this hospital with 298 beds.
Ketones are flowing in Princess Destiny's body now; glucose is averaging sixty. Monday night and yesterday morning were very literally filled with petite-mal clusters, and barf. Can you say Raggedy Ann?? Yesterday evening was much better, but a horrible night followed.

Here are a few video clips of Destiny today:

Yesterday we prepared Desty's meals for today.
BREAKFAST: 25g strawberries, 8g egg, 46g
cream, 9g bacon, and 12g butter
LUNCH: 47g cream, 18g cooked carrots, 12g skinless chicken breast, and 18g butter
SNACK: 46g cream, 6g purple grape, 36g beef frank Oscar Myer, and 6g buttery
DINNER: 46g cream, 36g cooked broccoli, 4g processed American Cheese, 8g lean ground beef, and 15g butter

Just one gram + or - is not okay. She is on a 4 fat to 1 carb ratio, gets 1350 calories/day, 20g protein/day and 43 oz of calorie-free fluid/day.

I will test her urine 2Xs a day to chart ketones, and once a week I will check her urine for blood and protein.

Obviously this "Blubber Diet" is not nutrition complete, so pill supplements are imperative - of course, supplements, medications, lip balm, toothpaste, sunscreen, ointments, shampoos, etc., must be 100% carb free!

I could be overwhelmed....LOL...I could be sad and scared and have any number of feelings. Oh who's kidding?! I AM ;-)

HOWEVER, my Love for this child of mine tramps my Trepidation, and if this is a mountain I have to move for this child to have healthier brain functioning and a fuller life, please bring it on, BRING IT ON!

(Please forgive the messy format? IPad and YouTube still have bugs to perfect for blogging.)

Monday, June 20, 2011

The Destiny Diet Launches

And so! The torture begin! If you're disappointed by my lack of optimism and perkiness, you've never been in my Crocs.

Last night Desty was admitted to Children's Hospital in Aurora, Colorado. Wait! This calls for a very brief backtrack.
My girl has uncontrolled seizures, some other associated difficulties, a genetic mutation, crazy EEG readings, seizure history - put it all together and she has what's recently been referred to as a Dravet Spectrum Syndrome. Why this damn mutation can't give Superhuman Powers - I don't know! With a name like Destiny, she should be competing with SuperWoman or likened to the Greek Goddess Clotho and not fighting for a happy, healthy childhood!

I was pretty okay until we were introduced to Mr. Dysautonomia just a few weeks ago...for a later post!

Here we sit in Room 630, starving Destiny for a Cause. She has failed on so many anti-convulsant drugs that there's only a 5% chance of any new FDA approved medication being effective in controlling her seizures.

(Now, there's a drug that's been approved for ten years in England - the only drug in the world with an indication exclusively for Dravet - but it would come at a deep out-of-pocket expense...for a later post!)

Our aim is to put this child into a state of ketosis so that her body will start burning fat for energy instead of carbs. They don't know why it reduces or eliminates many kid's seizures, but I doubt I'd understand it anyway. Watch these videos About the Ketogenic Diet and Another Great Keto Video.

So here we sit (still! ;-)) in Room 630 purposely making my daughter ill, lethargic, nauseated, waiting for her blood to become acidic, checking her pee every three hours. It is 4:00 in the afternoon and, albeit, in high spirits as my happy little girl usually is, every hour she says in whiney confusion, "When is my breakfast gonna be here, Mama?". She still thinks we're waiting for breakfast, even though we remind her every hour that she'll get four 3oz Vanilla calorie shakes today, a bit more tomorrow and a real breakfast the day after tomorrow.

The funny thing is that today I bet Desty is the healthiest kid in this hospital - seizure-free thus far and she's still burning carbs! ;-).

My son, on the other hand, has had a fever for a third day now, is pukey and generally miserable except that his "hospital" is a kid wonderland and he has a mom and her three adoring teen daughters and their dog nursing him back to health!

Trying to get one kid to STOP puking and feel good, while MAKING the other sick...Great Times, I tell 'ya!

So many wonderful people in our lives!!!

This is the first post I've ever tried to publish from my IPad - YAY! I plan to post lots, minus cool pics and videos, this week to keep folks updated.

- Posted using BlogPress from my iPad

Saturday, June 11, 2011

A Tired Boy With Double Cowlicks

I LOVE THIS VIDEO CLIP!!  It completely captured Tired Benny, Reserved Benny, Excited Benny and Mischievous  - all in 3.5 minutes.

Following his Failed Attempt to take him on a bike ride to avoid bedtime, we watched this clip together.   He immediately burst out
And then he asked if he could grow his hair out like mine. 
I quickly explained that little boys and little girls that choose to have long hair are also choosing to comb or brush AND wash their hair.  Tomorrow's destination: Our Neighborhood Great Clips.

It was a tough day around here ladies and gents.  I contemplated whether to go with a funny or deep post tonight, and decided to just let Benny offer the entertainment...the world just isn't ready for my depth after a day like today.  Yes, Desty's okay as I type this...the more we get to know her seizure syndrome, however, the more I must adjust to being okay with the Unknown...for those of you that know me well, you know that I naturally fight against the Unknown.

Thursday, June 9, 2011

Just Keepin' It Real, Dawwwg! A Rebirth With A New Birth

SURPRISE! The Boulder MomOnWheelZ is back, and ready to ROCK THIS BLOG! Warning: It may be a bit of a rocky start, as I live not the same life that I did 2/3/4 years ago when this was a
Fire Text - http://www.flamewordmaker.com
site...I may lose some loyal readers of the past, with my Proud To Be A Single Mom Mantra, but as Austin Powers would say, "Hey Baby!" and Randy Jackson "Just Keeping It Real (Dawg)"! I had to include the "Dawg" at the end there because well...I just love it! ;-)

Speaking of babies, last night I became an Auntie (by Spirit, much stronger than Blood, in my book of Tammy Holies), and my kids have a younger cousin! (Oh my Gosh, after the newness wears off, I'm gonna have two jealous kids on my hands!)

Sophia Elif Yenginer, 8.2 lbs and 22 inches, a true beauty! I'm so happy for Chantee and all the fam, and I sooooo wish I could be there for her, like she was for me all ?? 2 times (wow! It seems like I delivered Benny three times - it took so long!)

How many of you are my Facebook Friends(aka my FF's)? - raise your hand. I have magical powers and I see you through your screen. I'm watchin' you! LOL as I type this, I wonder if old age (33, but feel in my 70's more frequently nowadays), divorce, single-parenting, work, unemployment, and very recently receiving full initiation into the Parents of Kiddos with Special Needs Club, has somehow jaded me? Hmmmm, yes, definitely.

I Came Out on Facebook about being "un-married" on Sunday, December 6th, 2010, six months after the split, 2.5 months after the big D. Every couple months, I'm reminded that not all of my FF's read my Proclamation to the World.

So, here's the Real Deal: This blog ain't gonna be about that. That is history that does not deserve reliving, and the why's really do not matter. I flunked almost every history class I ever took, so if you want history, don't look here. And, as most of my friend's know, drama does nada for me.

I, Tammy Ann, have ALOT to say about the Present!

From this post forth, this is MY blog about being the best MomOnWheelZ I can be, my thoughts, feelings, a place for me to brag, vent, and bring my friends (and future friends) along with Benny, Destiny, Tank, Buck and I on this incredible adventure most call "life".

What is a Buck, you ask? Bait to keep you coming back for more!

Some of it will be a nice, blissful go-to-bed-feeling-happy and refreshed read - you know, the type that gives you sudden brief giggles for the next hour or so. Some posts will leave you bleeding along with us, especially as we get to know Dravet, and make room for the Wicked Monster in our little family. And some posts will make your shrink a very rich person.

Are you excited? Hang On Tight - This is a Scrambler with no emergency Shut-Off Switch!

This is my family.

This is my family all naturallll.

Hold your questions please!