I sit here in a room at Little America in Wyoming, watching Phineas & Ferb with my super happy boy, my daughter, our "Bucky" and my dog.
It's New Years Eve, I think, and I am feeling the urge to post. Most people are looking forward tonight to the possibilities of 2012 and committing to resolutions. I'm not so into that sorta thing. I see life in 2-day segments. I am so focused on surviving and thriving in the moment - my simple brain just cannot absorb much else!
Every New Years I just feel grateful. It's like having 2 Thanksgivings a year in my head, and it's wonderful!
We are just ending a fantabulous!! vacation in Utah. Of course, I'm thankful for the people that made our time there both possible and so very special.
But there is so much more. Here is a quick, not-very-well-thought-out, list:
- I'm thankful NOT to be working!
- I'm thankful for the addition of Tank, my very loved baby cow!...my personal psychiatrist and best friend!
- I'm thankful for pictures and the power of memory.
- I'm thankful for the opportunity to be so involved in my children's education!
- I'm thankful that they want that kind of relationship with me.
- I'm thankful for the great opportunities available to us...and for scholarships!!
- I'm thankful that Destiny has a diagnoses, so we have some answers.
- I'm thankful for the hope of treatments for my D.
- I'm thankful for technology giving me so many support networks.
- I'm thankful for our accessible van.
- I'm thankful for my IPad!!! And BoxWave Stylus'!!!
- I'm so thankful for the many new friends I have made in 2011.
- And for long-time friendships!
- I'm thankful for Buck's somewhat odd position in our family! I love this new pic!
- I'm thankful for good child care givers, and really need to clone them!
- I'm thankful for life, love and that miracles happen every day in our family.
Is it possible to enjoy a miserable time? I think it is....
Yesterday I took Benny and his friend to the zoo. They played in a warm class, doing tie-dye, touring the tropics exhibit and learning about VENOM!
For two hours...
This is what I did...
LOLOL! My friend, the boy's mom, gave me a way out of taking them because it's been such a sleepless week for us, but the crazy person in me said, "Oh, thank you! But don't worry - we're going no matter what! I planned for Dest to be tended so I can take the boys. Benny needs me too..."
And no matter what I meant!
Immediately after dropping the boys off at their class, I almost fell asleep on a toilet in the men's bathroom - don't ask! ;-)
It was so cold and uncomfortable, my bones hurt, I was so tired, etc., but I kinda felt like I was doing something naughty, and THAT, my friends, was cooooool! No one was there - I pretended we snuck into the zoo......
That, on top of listening to these two seven year old boys chat away about things that'd alert the FBI, really made a miserable time FUN and worth it!
Draw a STICKMAN! Seriously - did you enjoy that as much as I did?! (Make sure you clicked the link ;-) for your adventure! Cheap and simple entertainment! Here's my big headed stickman...
Our study of the rainforest ended, and now we are in space. My logic is that in order to study the solar system, 'ya gotta have a way to get there...thus, Destiny needed a Space Shuttle! Between Buck, Destiny and I, we engineered the "Destiny 5" (hey man, in kindergarten, this IS logic!)
This video took place a couple of weeks ago. Today, here are both kids just before our launch to the moons!
Next step: making paper mâché of each planet! This one's gonna be as much a lesson for teacher as student! I accept all advice on this craft... ;-)
The Sunday before last, we had home school with big brother, Benny. It was our big butterfly lesson.
We first transferred our Cocoons from their jar to their Butterfly Habitat net.
We then glued butterfly coloring sheets onto construction paper, cut the butterflies out, painted half, folded it symmetrically and VWALA! We had symmetry!
We then drew symmetrical lines down our faces!
We also created butterfly life cycles!
We had such a neat learning experience! Benny points out symmetry all over the place now.
After two and a half weeks of raising our butterflies from larva, it was time to release them to the world. This was Destiny's job, and she did awesomely! Watch this video...
He had a wonderful experience and came home talking up a storm! He couldn't really remember what he learned but he definitely remembered hiking for nine straight hours (LOL - Ya Right!) and all of the fun games he played with his friends! Oh my goodness! - the child REEKED something fierce upon his return! YUCK!
Many of you know that our family has had a difficult few weeks. Destiny's cold triggered the progression of her Dravet Syndrome and we spent much time in Urgent Care and Children's Hospital.
We went on a family field trip yesterday morning to our local fire department. Seriously, it may be one of the best things we've ever done - it could not have been a more meaningful experience for each of us.
I laugh...and I cry...Three of the five firemen on duty knew my sweet Little Destiny!
The firefighters/EMT's were incredible wonderful to give each of us what we needed.
Destiny spent nearly the entire hour in the Ambulance, getting familiar with all the gadgets, and doing a bit of play therapy in there. She also learned about calling 9-1-1.
Benny got recognition for being the Super Big Brother, and too often, usher for the firemen when they arrive at our house. He was all over every vehicle, asking very complex questions about each and every tool. He soaked it all up like a sponge!
I was able to present a clear picture of who we are — HAHAHA - when we're not in crisis mode, give them (and even dispatch) valuable information about our needs, and also ease some of my concerns.
Glorious!!
Before going, we created the following (very cute!) list of ten questions: 1) Do you really have a dog here? (no, but they're working on convincing the chief! ;-)
2) Do you have a family? (yes, they are just regular guys...48hr shifts)
3) Do you ever feel afraid? (yes)
4) Do you ever help the policemen? (Quite often)
5) Why do firemen always come before the Ambulance and paramedics? (They have EMT's on every firetruck and all of the same equipment to do everything an ambulance can except transport)
6) Do you feel sad when you see someone hurt? (yes, but usually they can help them, and that makes them happy!)
7) Can we ride the fire pole? (LOL they want a fire pole, too!)
8) Can we go in the firetruck? (Absolutely!)
9) Do you ever get lost going to a house? (no)
10) What happens if you get two calls at once? (the next closest crew goes to the second call)
And, I just have to share this video of our Basketball Team!
When the children are in bed, and the likelihood of a seizure is low enough that I am comfortable leaving the bedroom for 30 minutes...this is what goes down, Ladies and Gents!...
PAC MAN
VS.
THE TAMINATOR!
I can't help it - I take my gaming very seriously! ;-)
The kids don't know about this...I'm very careful to put the Plug & Play joystick away immediately - like nothing ever happened. Shh! The graphics on these old video games are a sure seizure-inducer (an idea for our next EEG - LOL! - but Desty doesn't seem to waste any time seizing on record...)
Playing PAC MAN is definitely one of my favorite childhood memories. I only need to control the joystick - no button-pushing required. My dream is that one day, PAC MAN can be recognized by infrared in my elbow joystick...then I could really eat me some ghosts!
Aleeza? Friends at ATP? Are you up for a project, and blast to the past?
Thanks to my 'ALMOST brother-in-law' for giving this joy back to me after decades!
- Posted using BlogPress from my iPad
Below is Benny's video response to the wonderful movie,"No More Baths". Make sure you watch part two, as he relates the movie to his life experience, ever so briefly.
Part One
Part Two
As Benny watched this movie, he was at the end of his seat, very emotionally invested.
I have been listening to Destiny's Musical practice CD too much lately, thus this post's title. Last November, she was a clown in a local Children's Musical, "Circus Circus". This past spring, she was going to be in a musical about fish but I ended up pulling her because her health was so completely unstable :-(. Alas! Now she is back for a round of Lemonade!
When I see her in practice, enjoying it, really picking up what she can, my heart feels like it may implode! What a total difference not having absence seizures makes, while in that type of group setting!
She LOVES it, I love that she loves it, and it can be counted for K Language, Social Studies and P.E.! As I've heard several times now, a musical has three components: 1) Singing 2) Acting and 3) Dancing. It truly is magnificent, and it's her very own.
There's a part in Lemonade! when someone shouts, "Someone call a doctor, someone get a nurse!" Every time she hears it, my daughter bursts out laughing and repeats it over and over! Unfortunately for Desty, she relates on a deep level...The magic in this is that the teacher is giving her that line, and for once Destiny will have the control; she won't be the one that needs medical attention in the musical. HeeHeeHee!
Destiny also is in Biking, and has already gone to one of many Homeschool Days, we have memberships to the zoo
a few museums, gardens and Discovery Days. Benny's kindergarten teacher whom I absolutely ADORE is a natural creative genius and she's doing three hours a week of pure creativity/crafts with Desty - which I'm so so thrilled about!
So, once in awhile, when I tell people I'm homeschooling her, I sense their concern that Destiny is missing out on socialization, or that she is being segregated in some odd way. Well, let me set the record straight, right here, right now - Destiny, and many other children who are homeschooled, get much more socialization than they would sitting with the same thirty children day in and day out, in the same environment, PLUS these kids avoid some of the pressure a class situation can produce. Lonely, it most certainly is not!
I digress...(saving my sharp opinions about stigmas for another post. I want you all to see how totally and completely blessed we are here!)
I don't teach by any one curriculum. I have gracefully by-passed the stringent constraints of the school district by enrolling Destiny into a private school that allows for homeschool with whatever curriculum I choose. I refused the state's "online school" because if I'm going to teach my child, I want all of the responsibility, and I certainly don't want to be micro-managed in this.
It's so funny...Before making my decision to homeschool Desty, I heard how easy, fun and natural it is from half the folks that knew I was considering it, and the other half warned how grueling and how much work it would be (I'm betting those friends had to deal with the district a lot...)
Homeschooling Desty is, without a doubt, the most fun and fulfilling think I believe I've ever done! My driving principle in teaching Destiny is that life is a natural school, and living to the fullest promotes learning. Yes, I have to prepare, especially when I include Benny in our school, but honestly it is not a lot. And I'm so much more 'in-tune' with both kids now; that makes it even easier. And they love it! They want school into the evening! Benny is still at his school, but last weekend he begged for homeschool...I think I've been 'teaching' every day for two weeks! And then, he caught a cold, missing Tuesday through Friday of this week. His teacher sent home some of his work, which he quickly finished, and I created some lessons for him. He misses his compadre, Sam, but it's been a fun sick-at-home four days. He really misses Sam! LOLOL!
When we are not sick, we are out in the world learning through experience and we are home creating. My friend called Desty's school a World School - it really is. Take a good look at the pictures throughout this entry. This is our school! Everywhere! My Destiny knows when to use a "Mama A" and a "Baby a". I was wondering how I'd ever explain that! To me, it seems so silly, at first impression, why there would be two of the same letter that are different. She thinks nothing of it! VWALA! - and the rest is a game! I'm beginning to think in Dr. Seuss verse ;-)
I just have to share one of the things I'm totally stoked about, for those of you who aren't Facebook addicts, and then I'll have to leave you on a sad note (after all, this IS part of my therapy! HA HA HA! ;-)
Pen Pals! Destiny has three - all Dravet Angels! - one in CA, one in IL and one all the way in New Zealand! And, as of tonight, Benny has a Pen Pal in Australia, whose cousin has Dravet! (of course, he wanted in on the FUN, too!
Now, comes my sigh...Destiny has her first cold in a long time - a simple cold, yet brutal. Seizures galore, choking, labored breathing, cognitive and coordination issues again. It's okay...I know that as long as we keep her from status epileptus, she'll probably bounce back as soon as the cold leaves. But it's painful to watch and relive. On her Diet, there aren't many decongestant options that are safe. She lacks the power to clear her nose. Today as she napped, we manually held her mouth open so she could breathe easier, guarding off another seizure.I keep reminding myself, "This too shall pass..."
Wait! I can't/I won't end on that note! Watch this clip... This nice garden caretaker took my eager little girl in to feed the ducks!
This is my blog, my story as a woman with a disability, as a divorcee, single mother, and so on. Basically, this is my autobiography of my life's evolution as of the date posted. I see professional blogs and I'm quite envious of the ease with which the author shares their honesty. (I should say that I'm usually glad I don't know the blogger because I wouldn't want to be a subject matter!)
My fear of being harshly judged for my thoughts, feelings and actions is dwindling as I gain more and more confidence in myself. I think about how difficult it has been in the past to hide certain decisions I have made, how much energy it drained from me, and the internal anguish and loneliness it caused. And how liberating it was to finally be able to tell people, and accept their support. I am done being ashamed.
This is my blog, gosh dangit! And that's what I'm gonna do! After all, no one called Child Protection when I let my 'medically fragile' daughter go down a Zip Line! LOLOL Sorry! ;-) The thought did cross my mind!
My point is: This is my real life!
--------------------------
Well, hmmm, where do I begin tonight? Once upon a time, I was told, "I'm positive, and so are you!" and my life was forever changed. The positivity that my doctor was referring to has turned into a 7-year-old boy, the Sonshine of my life and grey in my hair. He's in the second grade now, his body slightly more ill-proportioned with each passing month - which makes me happy and nostalgic all at once. Nowadays, you can expect him to be strutting around with a bright red Mohawk atop his ever-big head. Today we were spared the Mohawk.
Suddenly this child of mine is trying to convince me to home school him, alongside his sister. Hold on, my dear readers! - it's probably not going happen. I'm going to take the next few weeks to give him time to settle into his second grade class. I'm thinking that once he's settled and knows his place in class, he'll give up the idea. However, I will not refuse to evaluate the idea with him. In fact, I believe there's a great teaching lesson in this for both of us.
I can think of several pros and cons of teaching him myself off-hand. But I want to really think it through, determine if I have it in me to teach at two different levels...and not get a 'Benny break', and lose a lot of my one-on-one time with my Destiny. I'm feeling a bit stingy about that aspect.
And since Benny wants to try home schooling, we are going to have school next weekend and the following weekend to test the waters. He will be creating his own Pro/Con chart on the subject. LOL I'm thinkin' it will be a non-issue thereafter! ;-)
(I really like his teacher this year, so hopefully things will go smoother for him in the coming weeks!!!! Crossing all digits! ;-)
Ultimately, it is my decision based on what I believe is best for Benny.
Today we went and watched the new Winnie the Pooh Movie at Cinema Grill. If you want to take a kid to a kid movie in a family-friendly theater for a special experience (opposed to screen quality!), This Is The Place! And it's cheap, too! $2 admission, and then you order restaurant-style. We got a movie, lunch and dessert for less than the price of admission to a regular movie theater!
It tickles me to no end to hear my growing boy squeal with delight watching our Hundred Acre Wood Friends!
After the movie, we checked out the vintage car show in the same parking lot. It was pure Awesomeness! I really love suped up trucks!
Neither kid of mine could accept that our Chevy Town & Country mini-van is not nice enough to put in to show! It was hilarious! I made Benny ask this rough looking fella what kind of car he had...Benny came back to me, shrugging, "He says it's a caaar vet". I try not to laugh at my kids, but once in awhile, I just can't help it! So Benny kept repeating himself, and I couldn't stop laughing!
I decided I wanted even more cheap entertainment, so we stopped at a Outdoor World (comparable to Cabellas). For free we get a museum, an aquarium and a rock wall - as good as an amusement park!
Today was Desty's first day of her Kindergarten Adventure!!!! It was absolutely wonderful, I tell 'ya! We were scheduled to begin next Monday, but she was having trouble waiting, watching me create her curriculum, and I was having trouble because she was...Thus, we began! (Don't ask me when I'm gonna have time to continue my plan!)
This is Destiny playing "A-E Driveway Hop"!
She practiced her capitalized "A's", we talked about "Alligators", "Apples", "Airplanes", "Ants" and pronounced different "A" sounds. We're going to focus on the letter "A" for three days, then "B", "C", "D" and "E" for three days each, and then we will spend a week reviewing letters "A" through "E".
We began our rainforest section. Can you believe my daughter knows that birds and monkeys live in the Emergent, and the Canopy is the roof of the rainforest?! I didn't even know that until three days ago! On a 3 foot piece of banner paper, we are creating a rainforest of our own. Today, Desty and Buck began by making grass for the rainforest, trees and flowers. This is going to be a week and a half long project, and we are going on a couple of field trips to experience the climate and some of the creatures that live there.
Here's some Magic for you: We are awaiting the arrival of catapillers so that we can raise butterflies. The habitat was out on our kitchen table while Destiny and I were watching Pocahontas. Apparently, a butterfly landed inside of the net, and Buck quickly zipped it closed. He brought it downstairs to us, but I didn't notice our beautiful friend in it for a good half hour...At which point I screamed like......Benny (LOL) until I figured out what the heck was going on!
This is a cute video of Desty trying to set our new butterfly-friend free.Sorry about the rotation, ladies and gents!
When we wrapped up our school day, you'd think I broke Desty's heart. If she still feels the same about the end of lessons in eight months, life will be goooood! ;-)
"I'd rather die tomorrow than to live a hundred years without knowing you."
Last Spring, on May 21st, I sat through a four hour meeting, called an IEP meeting, at the school district. This meeting had probably two dozen people at it, and was all about my Destiny. The meeting was excruciating, confusing, and as far as I'm concerned, a room so full of buearoCRAP that I was suffocating. It was during the tougher times for my girl, when I felt her slipping away with every seizure, every fall, every word forgotten, every heat stroke. I was still working at the time, though my heart was elsewhere.
Destiny's advocates moved mountains for me that afternoon as I felt salt pouring into a wound much deeper than the one made by a hip replacement, or any pain I have ever endured. The school, the accommodations, set in place that day were absolutely necessary for Destiny to be able to attend Kindergarten this year, and for me to continue to work.
Weeks after Desty's IEP, I followed my heart, resigned from my job, embraced my children with all my heart, and took on the responsibility and administration of the Ketogenic Diet for my daughter, which has very literally brought her back to life, in many ways.
I am overcome with gratitude EVERY DAY for this good time the Diet is giving us! Maybe this good time will last forever - I pray selfishly every day for that too. However, if it does not, I do not want to regret anything. I am bound and determined to cherish EVERY moment possible with both of my Kiddos. Being very different personalities, that looks different with Benny than it does with Destiny.
That also means that I refuse to disable Destiny. To the contrary, I want this child to meet and experience the world where she is at - I want to capitalize her abilities, to feed her soul with love and confidence. I don't know, of course, but I'm choosing to believe that the higher she is on life, the smarter she is, the happier she is, the harder Dravet will have to work to bring her down.
Getting to the point!...
I have officially decided to homeschool Destiny for Kindergarten! I will leave you all to your eclectic array of reactions, knowing some will be harsh judging and some will not be surprised and even allow me the benefit of the doubt that I'm doing what's best for Destiny and I. And a handful of you are very relieved that I finally have the courage to follow my heart again and finalize this big big big big decision ;-). Either way, I love you all (especially my newly unmasked KE spies! ;-), and please stay tuned for many many more adventures of this BoulderMomOnWheelZ!
My boy starts 2nd grade tomorrow, and I really believe it'll be a great year! His school really went to great lengths to place Benny with the best teacher for him (& his best buddy!). I'm so excited for him!! I'm so proud of him!!!
As I type this, I sit inside Water Park of America, America's biggest indoor water park, relieved (and icky hot!). My boy got busted by a lifeguard, not 30 seconds in these doors for jumping into the river intended only for innertubes. I wasn't scared for him - he's a very very strong swimmer and I watched him weave in and outta innertubes like a champ. I was TICKED - so TICKED at my child's (I'm sorry - I must say it -) stupidity! He'd better be glad we are in a loud, public place, and paid to be here. He gave meaning to the phrase "To Skin Alive".
Here's the best part: A big husky lifeguard saw the look on my face, chased Benny down with his whistle, and walked him back to me...I was so grateful, I could've mauled the lifeguard with love! ;-)
Right now, Benny is off chasin' waves and going down body slides and tube slides and lovin' life. He must check in with me every ten minutes or thereabouts. Destiny and Buck are tubing and waving and having a grand time.
It was more fabulous in real life than I ever could have imagined!!!
I didn't really get to experience the mall, because the attractions were the big bait for the kids, but I threw some thoughts unto my Grandma Mildred, the biggest mall-walker ever...
I, personally, LOVE the Swings!
Desty and I met Dora and Boots. She was so excited, she charged through the fence, interrupting another kids photo shoot! LOLOL It was truly hilarious! I could tell the staff is used to Dora-crazed tots, and gently guided her to the line. (Sometimes, it works to our advantage that everyone mistakes her for a three year old ;-). She was so determined to find out how Dora made her watch, and why she wouldn't talk. I was a little too comfy nestled in Boots soft bosom! - I really wanted to close my eyes and drift...
So! Yes, we had a lot of fun, and made priceless memories. I would not do anything like Nickelodeon Universe again without 2-10 more hands though. I really wanted to ride Orange Streak Coaster with Benny - his first mildly big roller coaster. The staff insisted I needed a "chaperone" on with me "just in case the ride breaks - someone to carry her down". Hello! There are no stairs up there - really people - no one would be able to carry ANYONE down if it stopped. Desty was two inches too short to ride, even supervised, but they were going to make an exception and allow her to ride so that I'd have my "chaperone" on the train. I, of course, refused...there's no way in hell I'd put my daughter on that ride, especially breaking the size requirements, so Desty and I agreed to sulk together while the boys went on it. Benny is over the height to ride alone, but I wanted someone to share in his special moment. The train returned without mechanical problems, with Benny screaming to ride again.
It is hard to keep track of Desty anywhere, as she is a wanderer and lacks safety awareness oftentimes (part of her disability). When you have Benny yelling/begging to go to the thrill rides, and you have Destiny, who runs for every tiny tot quarter ride type thing and walking characters, you've got high blood pressure. Not to mention restroom breaks, water breaks, meal breaks, and it's to loud for mom to communicate, etc. It was fun, but really difficult for Buck and I to manage. Wow! Next time, we take a small army!
I just saw my daughter bodyboarding on Cascade Fall Flowrider!! Oh my gosh! The lifeguard got her on the wave and the water carried her up and down the wave. She LOVED it!! She would've been stuck like that forever though. The Flowrider guard swept in with such grace, gave her her own little swervy ride, worthy of applause, and truly made Dest feel like a star.
Destiny has made a full recovery from last Friday morning's crisis, and both she and Benny have soared to new heights since.
They have picked corn from gigantic crops, been stuck in the mud on a forrest work road and have had to be drug out by a massive tow truck, gone fishin', swimming in Bowstring Lake, gone snail shell hunting, caught frogs and tried to feed them, ran all over a huge lake property with Tank and Tank's new friend,Shadow, peed in a double-outhouse LOL and, last but not least, played in a treehouse and flew through the trees! Literally!!
Watch them go...
Them are my kids!! I'm so proud of both of them, and I'm truly grateful for all of the nice new friends we have made in northern Minnesota!
You all know that I'm the Adventurer, and I desire experiences of all kinds for Benny and Destiny. With Desty's new diagnosis, my desire has grown much stronger...I am pretty optimistic about the future, and I need to know that I'm doing all that I can to keep the good times a'comin'!
One of my favorite moments this trip, was when we accidentally ventured onto a dirt road not meant for vehicle use and got stuck in the mud.
Outside, we were surrounded by an unbelievable gang of mesquitos and trees (and whatever lived in them!). After being pulled out by a friendly tow-truck man (who I actually am convinced is an angel - I really don't know how he got to us so quickly...), the jolliest sheriff I have ever met escorted us to our destination for the heck of it. Benny and Destiny, instead of being afraid, now know that if they're ever "stuck", the police and others are around to help. 9-1-1 isn't just for bad seizures and asthma attacks ;-)
We bid Minnesota farewell as it's time to come home....hopefully by Saturday.
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!
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...
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!
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.
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.
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 ;-)
