Adventures, Seizures and Bumps

We are resting in a hospital waiting room in Dickinson, North Dakota. WAIT! - All Is Well! - Or, I can just count this night as a Great Burton Adventure (that I could've lived without!)

Let's retrace the road that we have traveled this past week...

Buck, Destiny, Tank and I arrived in Salt Lake City last Saturday, to pick up a very missed Benny after he spent two weeks with his Aunt, his Mee-Maw and all their family. He had a blast, (and quickly overcame his post-vacation-without-mom trials and tribulation ;-). We stayed in SLC for two nights and it was awesome. Just awesome!

Driving home on I-80, Buck remembered his family reunion is this weekend in Bowstring, MN (I think it was the morning after we were so blatantly discriminated against in Little America, WY - ha! Truly Little America!...). We spent the next 200 miles on I-80 strategizing if and how to get to Bowstring. We hit Rawlins, WY, and our van went north, and the Great Burton Adventure began!

As with any spontaneous extended vacation, there were some initial obstacles to overcome.
-> Desty's meals, Tank's food, we didn't bring a cord for my wheelchair battery charger. No problem! - Just part of the adventure. We conquered these things with smiles on our faces :-)

My smile vacated the premises on Wednesday when Destiny's neurologist emailed me to inform me that Desty's lab results show she if very deficient on a specific amino acid that is necessary for Ketogenisis, and pick up a prescription immediately. We quickly had our local pharmacy transfer the prescription to Billings, MT, and we had to wait until yesterday afternoon to pick it up.

I looked up Levacarnitine on the Internet and one of the side effects is SEIZURES - LOL! I immediately turned to the experts - my fellow Keto parents! As it turns out, lots of Keto Kids are on this drug, but it is a "start with extreme caution" medication. Very, very slowly. Even when extreme caution is taken, many children can't tolerate Carnitine supplements.

On that note, and no thanks to Desty's neurologist, I decided to give her only half the prescribed dose this afternoon.

Today was a wonderfully enjoyable day...we had so much fun together...all of us. I-94 is beautiful!!!!

Tonight Destiny had a 23minute seizure on I-94. It was a pretty bad one. I believe that she is okay because of Mother's Intuition. I heard the DVD Player fall, and I looked back and Tank had his front paws on the bottom of her car seat. Odd, I thought...then four minutes later, a dreadful cry...I knew immediately. Light on, and there she was, eyes wide...I won't detail the next several minutes. Her "Rescue Med" finally worked...in the early days, this drug had immediate results...in the early days. The thing that really concerned me this time was not knowing what a possible Carnitine-induced seizure would present as. If oxygen is needed, where the hell are we?! (Excuse my French...) Does Buck have enough room in this van to do mouth to mouth? We were parked on the shoulder of the Interstate with our hazards on, with an occasional semi rocking the van.

Alas! Destiny's fine, I'm fine, and we will continue on our voyage. Hopefully, she won't even know it happened when she wakes up!

So, why are we resting at a hospital? Because every hotel between Beach, ND to Fargo, ND are full due to the flooding. Thousands of North Dakotans have been displaced and are living in hotels and motels throughout the state.

It is a bit morbid to spend the night in the hospital waiting room, however, my son thought it was pretty cool ;-) I have to monitor Desty very closely with the rescue med in her, and it's not possible in the van.

This was just another bump in the road. I don't get to sleep last night/this morning, but I sure am looking forward to stopping early this afternoon to sleep!


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Destiny Flies!

My children's wishes really excite me!  I have Benny and Destiny convinced that they can tell their mama their wish and it still may come true.  Months pass and we still talk about wishes made and how we never know when they might come true.  One day a Lego shows up in the refrigerator or Ming-Ming is found napping on Desty's bed.

This is how I get my kicks! ;-)

Then I got kicked!

A few weeks ago, Desty wished she could FLY!  She jumped off beds, chairs, ladders, me, other people...She tried to fly with capes and angel wings.  This lasted for a few (frightening! ;-) days, and then she finally came to me in a half-cry defeated state, "Mommy, I'm never gonna be able to fly, am I?"  Just squeeze all the blood outta my heart!  So, I did what I always do when I don't know what to do...I Facebooked it!  I have hundreds of wise friends to call upon in these moments of desperation...

And, thus, it came to pass, that on June 19th, Destiny Ann 'flew' at Heritage Square Amusement Park and had a blast!

Notice the death grip I have on her here......that's because she would have taken flying to a new level as the lap bar was several inches above her little legs.  I wasn't a happy dragon rider...

On the Ferris Wheel she said, "Mom, it feels like you and me are in Heaven!"

The Ferris Wheel has always been one of my favorites, especially at Heritage Square...It's nestled in the foothills with an old-style Wild West/ Victorian theme - just a beautiful, peaceful scenery all the way around!  And such a contrast from the big town thrill parks!

It was a fun adventure!  Despite constantly pouring water all over my girl, though, she got heat stroke after only three rides, and of course, clusters followed.  We were quite hot, disappointed and heading out when something magnificent happened...the skies became a little dark and we heard roars of thunder in the distance.  While others groaned, we shouted for joy!

Blessed Be The Rain!

In 30 minutes, Destiny was a new woman thanks to the sudden cool weather!  And she went for another hour until the lightening was way too close and the rides shut down.

I really must break down and buy a Cooling Vest for Destiny NOW!  She could be doing so much better without the heat.  I long for winter...Hopefully she won't be sensitive to the cold, too!  We'll see!

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THIS IS MY LIFE...

...and I'm Damn Proud!

This is MY Girl, my Destiny! She cracks me up all the time, too! I'd say this is a 'Great Desty Day' - not the 'Best Desty Day', but a Great One. And I'll take anything from a 'Good Desty Day' up at this point.Being on this new alternative treatment, 'Okay Desty Days' tend to be very anxiety-inducing, as I anticipate a 'Bad Desty Day' in which I pull my Dr. Badge out.

What say you?

I could drag you all through my crap this week and last week and the week before and the week before that to get our Keto Team (HA - do two nurses make a team?) to be responsive and give me access to food options and answer basic medical questions. But I won't! Because I love you! The only thing noteworthy, is that when united, fellow people of the world....I do declare..........

We Are The Champions, and We'll Keep On Fighting 'Til The End 

(for our Kids!)

I won this one, and as simple as a Keto Calculator and a urine analysis to rule out kidney stones may seem, both are paramount in the life of this 5 year old child. A child, who before this magic food, had lost her ability to count even to four, stay in a standing position and speak in full sentences much of the time. This is what I'm talking about. Destiny Ann Burton is one of the champions of my world.

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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