YUMMY!!!

I very recently discovered Beignets, specifically Marnier Beignets. The day before Benny left on his trip to Salt Lake, I introduced him to my sinful delight. This is what he had to say about Beignets...

This is Fine Dining for us! Colttera's only serves these delicious creations for weekend brunch, however, the chef was kind enough to make a special batch the night before just for us!

YUMMY!!

Did you hear that laugh?? Priceless...

I have been wanting to post all week about our fun in the lake last Sunday, and fireworks. It was a very weird week, I can't explain it...just a weird one.

This conversation with my clever boy in preparation of his week with Auntie Chantee and Baby Sophia says it best:
Me: You know, son, it can be hard living with a baby.
Benny: And it can be hard, too, living with a girl with seizures, right mom?
Me: What do you mean?
Benny: Measuring and making all her food right, getting her to eat it all at the right times, remembering all of her medicines, testing her pee morning and night, watching her all the time, remembering her helmet, remembering her life jacket
(I smiled)
Benny: That's hard for you to remember all that mom. Oh, and when she acts weird...

I poked his expanding belly, we laughed and hugged.

It was a bit enlightening to hear from my almost seven-year-old, basically that I have a lot of responsibilities and we are definitely in this together. He didn't even mention all of the non-seizure-related parenting stuff I do. Do you ever do so much in your life, have so many responsibilities, that you don't even know it yourself, or why you are drawing closer and closer to the C-R-A-C-K-I-N-G point?  Alas!  I shant take all the credit...Buck, best friend/assistant/VIFM (Very Important Family Member) shares in all of this daily kid stuff...

I honestly don't know what happened last week. I do know that I had to race things to camp three times last week after discovering mere minutes after Desty left that I had forgotten to do or pack them.

I'm a tired mommy...someday....oh, someday, she'll be stable enough to go to Auntie Chan's for a week, or something...

Chantee and I actually considered a "Destiny week" this week: I would make and label all of her meals, meds, urine strips, etc., and Chan totally has all my faith. I decided against it, though, because if Desty had a bad day or anything strange happened, it would be very bad if I were 525 miles away. Too soon. Way too soon.

Last post I promised to blog of our fun adventures, but to Keep It Real, Dawg, I'm not in the mood tonight. Today was a good, enjoyable day -- I'm really having fun with one-on-one time with my Fairy Daughter :-). Friday and Saturday were fairly challenging as we dropped Benny off in Grand Junction, CO, and got our first taste of traveling with our new lifestyle. Mistakes were made; it got a bit hairy and was really much longer than I ever expected but I now know how to plan for our next go.

I want to share this enlightenment, and start fresh with a more uplifting and fun post in the next couple of days.

The Oopsy! Badge

Can a seizure be comical? Until Friday, I'd probably ram you very hard with my wheelchair if you even suggested the mere idea that there's anything positive about a seizure. Well, Destiny proved me wrong (again!).

So, I gave my daughter a very long seizure on Friday, in a full-hearted attempt to "normalize" her. Yes, I have two college degrees but that don't make me smart! ;-) just a good test-taker.

I prepared four menus for Friday, just as I do every day. The dietitians told me that I would need to learn to be creative, but they never really defined what creative might look like. To make an excruciatingly detailed story short, I inadvertently loaded breakfast, snack and lunch with her protein and carb allowances - to make it appear more like her fellow campers meals - neglecting her of burnable fats. Desty burns fats for energy, not sugar and carbs. Friday was an active day at camp, thus she must have been goin' on fumes by afternoon, or her body tried to switch to burning carbs again. Anybody's guess!

Desty took a nap, and wouldn't wake up. She was unresponsive, appearing in a very deep peaceful sleep. I got the call and luckily I was only ten minutes away. I wasn't convinced it was a seizure so I didn't want anything done until I arrived. David, the camp director met me in the parking lot, and I literally raced him to the staff room. As I rounded the corner and saw my baby spread out on a mat, comatose-looking, I allowed myself a free 10-second period of devastation. David picked her up laid her in my lap and I went into action. Pure mother's intuition here...I *think* I felt a tiny tremor...

Okay, this is the funny part...the part that may forever change

how I internalize seizures, especially on this "Magic Food" Diet. We administered the Diazepam and my little girl sat straight up, looked around, stood up pulling her pants up, and cheerfully said, "I'm ready to go back to camp! Where's my other sandal? Hi Mom!". There were about six mouths on the floor, including mine! David's mouth may still be there! LOL! Buck, who has seem most of her seizures, calls it "spooky".

We know this seizure lasted at least 15 minutes, but it could have been more like 40 if it was the duration of her nap. I admit, I shook for a few hours that evening, trying to decide if I had to count this event as a 'daytime seizure', if it happened during a nap. I have since decided, for my sanity, that I don't care because I know the cause, and it was a fairly low-trauma reality check.

Albert Einstein said, "Reality is merely an illusion, albeit a very persistent one."

The Ketogenic Diet is merely another medication - the most effective yet! - not Desty's cure. No matter how effective the Diet is, she still has Dravet. Period. For the time-being, the Keto Diet is the treating mechanism and I am the pharmacist.

Another Keto-mom told me that now, when her daughter seizes, it's probably her fault, and we all do our best and, slip up, pay for it, then we continue.






If the past eleven days are not a fluke, if this Diet continues to keep the majority of my Destiny's seizures under control, then, on occasion, I will gladly where a badge that says, "I gave my daughter a seizure today; what did you do?!". After being through what we have this past year with seizures and the unknown, I embrace the illusion of some control!

I have been wondering if she is growing a bit irritated of the Diet because she knows she had a seizure, so this morning at breakfast I very carefully and briefly explained that she probably had the seizure because I messed up her meals that day.  She didn't pay much attention, but tonight at dinner she asked if she could whisper something in my ear...Proudly..."Mama, you know how  I had that seizure when you messed up my diet?  We all make mistakes, Mommy!"

A promise to my Readers! - My next post will not contain the words 'Keto' nor 'seizure'. 'Lake', 'fun' and 'Tank' will be the key words ;-)


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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.

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:

"YES WE CAN!"

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!

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!"
BLAAAH!

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.

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.)

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