Destiny's Emergency Admit

"You've Been Holding Out On Us"

My jaw dropped and I wracked my brain for some piece of significant medical information that I had forgotten to tell all the dozens of medical people I had spoken with. Our attending, Dr Nell, said this our second or third morning here at Children's Hospital in Denvrer. Was she gonna put me to shame in front of all of her resident mob?

Then she told everyone about this site and my efforts to pay for Stripentol, and of my love for and determination to help Destiny. She had spoken to our Pediatrician that morning, whom she referred to as "quite the character". I love Dr. Doody beyond words...He is the picture perfect pede!

This meant a lot to me...I was able to express my love for this child openly and appeal to the senses of these future doctors, and beg them even harder to figure it out and save my Destiny. It gave me a chance to breathe, trust and to see our residents compassionate faces, when not in the midst of crisis.

Destiny was admitted through the ER on late Tuesday night. She was unresponsive. I'm not going to get into many details here...just share some reflections and pictures. The short of it is that is toxic on Depakote, thus on ammonia also, and it basically shut her brain down from last Saturday on. Much more complicated than I care to discuss ever again for the rest of my life!
There's been a few frightening moments, I.e., when it took 25-minutes of sternal rub to awake my Princess...usually it only took 10-minutes! Or the few days she was awake for 30-minutes total. Or when her blood pressure dropped very very low. Or when the doctors/future doctors kept saying, "We don't know yet...we have no answers..."

There is one thing that really brought me back, made me glad to be me, in those excruciatingly dull days. The choppers. Oh, I despise the sound of them! We're on the 9th floor; they are very close. I dunno...is it bad of me to not really think about the child in the chopper, but to feel heartbreak for whoever was left as the chopper flew away? I pray for the mother, father, siblings of the child landing on the roof. I realize that my child and I arrived here in our van, and we will leave the same way.

Finally, I think about our Dravet brothers and sisters who are frequent flyers, and I gain further acceptance that the possibility of me being the one left on the ground to chase the chopper in my van is increasing. This is good though; I really do better when I'm prepared. It's 45-minutes from my house to the hospital.

Okay! That was intense!

Now for a couple of funny stories!...All of you Facebookers know this story, but some of my blog followers are not on Facebook....On Friday, I was weakening emotionally, my tears were release! Very little progress had been made, I was beginning to doubt the expertise of the staff, I was so exhausted, etc. That afternoon, my son, my dog and my friend arrived. I went down to get them and GET THIS! Tank came in, no questions EVER! I hid my son in a wagon, covered him with blankets and bags to hide him & sneak him in!!! That was sooo FUN!




And we almost got CAUGHT by a rather stern nurse as B was climbing out of his wagon. Desty was awake, eating and looking good at the time. Silly girl says, "Where's Benny?" (hello! Like the first time she's coherent!!) then she looked past me and said, "Oh, there he is". Oh man! Her speech is so sluggish, I don't think the lady fully got it but she did try to look around, Buck jumping in front of the Sneak! Benny's grin priceless!!

The hospital has a 'no visitors under 14 rule' for good reason (I guess!) but this is his sister!...and you know I'm a non-conformist! ;-) This will be a fond memory!

And so will my memory of Harry, our neuro med student. From the very beginning I was annoyed by his presence! I felt it a huge waste of time that they would send in a med student that was completely ignorant about Dravet, if not everything, to give me updates from neurology and answer questions that he had to take back to the real doctors. I challenged the poor guy...and he ended up rising to the challenge, though I think it was a painful process! His second day I corrected him on the difference between Clonazepam and Clobazam, then I mentioned to his boss that maybe he needed to know that. (YIKES! Ok! I was so stressed! I didn't want him to be in ANY trouble, but I wanted him to know the difference ;-) Instead of hating me, Harry came back so genuinely eager to help us, and to listen to me, my concerns and my pleadings. He learned about Dravet, the drugs, and took a sincere interest. He is eager to learn details that he may never need to know again, and listen to crazy parents with information. By Friday, he sat in a chair beside me, telling me what he learned about Dravet Syndrome, taking final notes about contraindicated medications for Dravet. He does a rotation in the outpatient neurology department beginning on Monday...I hope to see him and show him that he was right: my little girl just needed time.

Desty has come a long way, and I thank my Dravet family who told me to rush her in, Buck for sticking with us, Harry and the residents, the nurses and doctors who really did their best to help my baby, the many friends who took care of Benny, Tank and Fishy, got us clothes, food, Patchwork for supporting Benny, and all of the prayers and thoughts from everyone via Facebook!

Tonight Princess Destiny is fully back to previous cognition, speech and energy, and her ataxia has made significant gains today! The detox worked!!!!!!!!! Outta here tomorrow, guys! Homeward Bound!

I hear a chopper...

All I can ask now is that people keep donating when you can to Destiny's Stripentol Fund!!!





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Night of Princess Magic

I'm going to regret this tomorrow! HA! -Quite the first-liner, right?! It's approaching 3AM, and aside from some sporadic Myoclonics, Destiny has been "seizure-free" tonight. It's always like this...she will have a bad, even atrocious few nights...nights when my lack of sleep almost feels excruciating, and then when the cycle ends, and she begins to have "good nights", mom can't sleep...Total creature of habit!...Also, I tend to be overcome with anticipation and gratitude for the upward turn...I think it must be hard to understand unless you've been there/here, as a parent or loved one of someone who fights for their life.

We have been on vacation, living in our Salt Lake City "apartment" since 12/18? Though, my eternal friend Lori managed to swipe us a free night in a suite one night earlier. So many things to write about, but I feel an urgent need to record some highlights from last night. Not even real highlights, but my personal reflections.

Now, wait! - first things first! - the drugs from Europe ARE still working. Stripentol and Clobazam = a treatment method, which far from a cure! Destiny has bad days and "atrocious" nights, but in perspective, compared to September and October, they are very decent ;-) but weird.

A bad night now looks like this: she'll sleep for 5-10minutes, have a 40-120second Tonic Clonic or Partial Complex seizure, followed my some myos, wake slightly, fall back asleep for 5-10minutes, have a 40-120second Tonic Clonic or Partial Complex seizure, followed my some myos. Rescue meds no longer touch these clusters. I may wake her up, try a mid-night Popsicle, but as soon as we get in bed to try again, we are right back where we began. Just gotta ride the night out. In my delirium, I fear Desty may never ever sleep again without seizing!

Okay, this post hasn't been about any Princess Magic at all yet!!!

So, to make an incredibly amazing and magical story short, these heroic, angelic, coolacious people threw a Grand Princess Ball for Destiny, in part to raise funds for her medication, but mostly to make her wish of being and meeting a princess come true!

Many thank you notes to come for this! It's a good thing we homeschool ;-)

The evening was filled with magic for Destiny, and magic for me - separately! The child was princess crazy, full of life and unrestrained energy as she would meet a princess, then quickly say with urgency, "I need to go find more princesses!!" To my astonishment, what began as 5-6 traditional Disney princesses, grew into gobs of mainly teen/young adult women in gorgeous gowns, who'd be introduced as "Princess _______". I swear they must've called their friends in to keep Destiny entertained!

Destiny LOVED the Queen dearly! My favorite quote: "Mama! The Queen has FIVE daughters! That's a LOT of surgeries!"

Pure Princess Destiny magic!

For me, the magic was the non-character guests...there are just a few that I will reflect on.

Ariell (that's really her name!) who I have known for 21 or 22 years. We met as twelve-year-olds and now our girls (and boys!) are growing up as cousins! This picture of Kysaija at 4 and Destiny at 6 so reminds me of the relationship that Ariell and I had at age 12! Kysaija is Ariell's mini-me - totally....

Ariell and K are literally one of about four "sides of our family". How lucky my kids are!! LOLOL! And how confused they will be! What grade do you do your family tree? Remind me to homeschool those years!!!

Then there's Eric and Addy who came, from the Cutler's "side of our family". I've known Eric for ~9 years, I believe. We have been at family dinners/parties etc., but haven't really spoken until tonight. I feel a special and unique bond with him and his wife, Barb. They have a little boy with uncontrolled seizures, and I frequently seek updates on him...so to my kids, our kids are cousins. It is heartbreaking to hear of their struggles, but a shared experience, when it naturally exists, is priceless. As we parted, there was a moment of, "Yes, yes, I do know what it's like..."

K, I don't know if I can convey anything of anything to make sense with this next reflection. To try to understand it, pause and read this dated post of mine: Visiting Diana. Diana passed away almost a year later, when I was laid up from my hip replacements. I guess you never get over losing such a special friend.

This reality that I am faced with concerning my Destiny's prognosis....there are two people I would give anything to look in their eyes and say "Help! Tell me what to do, think, feel. Tell me what my goal should be in mothering this babe." Diana and Laura are both gone. I swear they both would be able to console me, with their magic!

Anyways, Diana's kids, Spencer and Samara, and their new mama (who I truly adore and I'm soooo thankful for!!!) attended the Ball! I love this picture of Kysaija and Samara dancing with Benny!

Of course, the Galloway's side of our family was there - they helped put it on! I greatly missed Granny and Paz though!

I guess, for me it was a big reunion of people we love, plus many little princesses and their parents that we don't know, coming together to help my little girl (who shoved her cupcake in my face at the start of the Ball, squealing joyfully "Got'Cha!" ya, you better be glad I think you've seen it done at weddings, my Pretty! ;-).



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Location:Salt Lake City, Utah

Gnome and Deluxe Fairy Door Raffle for Destiny!

Raffle Tickets Sold Here!!!! Only $2.00 EACH!!





Young or old, all gnomes gneed to believe in miracles. It's just in their gnature to do so. Everygnome is destined for greatness, whether that be through great acheivements or small ones. Perhaps a gnome will one day save the entire garden, or perhaps their Destiny is to just remind their loved ones around them that life is good...

A special friend, Jennifer, of Gniffer's Gomes made this colorful gnome just for my Destiny. A friend of hers, (all the way across the world) in the UK, donated the totally radical Fairy Doorway to go with Destiny's Gnome.

Destiny is going to get this gnome for Christmas to watch over her.

Get your own custom gnome of your choosing from Gniffer's Gomes plus a Deluxe Fairy Door from Enchanted Doorways & Fairy Door Friends!!!

Buy Raffle Tickets by clicking the PayPal Button on the left column of this page and note "Raffle" when you donate! Each RAFFLE TICKET is $2.00. If you donate $10.00, your name will be entered into the raffle five times; if you donate $20.00, your name will be entered into the raffle ten times, and so on.

Destiny's Gnome Raffle ends on Saturday, December 3rd at 8PM (MST)!!!

Destiny will pull the winning name from a hat!!


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Make a Donation and Shop Simultaneously TODAY!

The Wings for Destiny Auction blasted off on October 30th! Two weeks into it, bids are totaling almost $600!!!

These past few weeks have been simply unreal...I lack the words and energy to describe it - that is why I have not blogged lately. I apologize to everyone who hasn't been updated on Destiny's progress lately. The meds are working!!! Whether they are going to work in eight months/a year/five years, I don't know, and I don't care right now...I can't care right now.

I look into my daughter's eyes and I see Destiny! Destiny's expressions...they just make my heart melt! I had to teach Benny and Desty that ”mommas cry when they're happy". (LOLOL!) I take mental pictures now, quite literally. I know what can happen...I feel so blessed in that way. I have the rare opportunity to, for country fans, Live Like I Am Dying. That's exactly what I'm doing, guys...No regrets!

Destiny is not seizure-free; her med cocktail is not a cure for Dravet Syndrome...I can't 'fix it' (DAMMIT, I say! ;-). But we can and are truly changing this child's life for the better! Seizures have decreased from 50-70 alarming seizures each day to only a handful per week. We were 'rescuing her' 3-10 times a day when her seizures were out of control. We have not given any type of rescue medication in over two weeks!!!

Desty is a fighter, and you and I are her sponsors!

Please take a few minute to look at the wonderful items that were generously donated for auction at Wings for Destiny Auction

This is such a cool way to raise the money for Destiny's treatment!

Anyone can bid! Just put your bid in a comment. Shipping is included. The auction ends on November 30th!!!

Please go today and start a Bidding War! ;-)

Challenge your friend's to bid as well!



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What Your Money Has Done

Thank you so very much for helping us bring our Destiny's spirit back!

We love you all!!

Please continue to contribute when you are able!


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Sometimes a Mom's Gotta Do What A Mom's Gotta Do

Sometimes a Mom's Gotta Do What A Mom's Gotta Do...Any Questions?

That 80's anti-drug fried egg comercial has been coming to mind lately...ugh...Desty's brain or my brain??...I'll leave that one alone!

Desty is officially OFF the Ketogenic Diet and OFF of a failed drug called Zonegran, titrating down a bit on Depakote, and is showing improvements as Stripentol and Clobazam begin to work together.

You probably have no idea what most of that means, nor should you. I hope you don't...




Destiny is doing much better - that's really all I care about. I pretty much went with my heart and (ulcered) gut to make most of these changes.

I have been losing my baby girl these past two months. Sometimes little by little, sometimes chunk by bloody chunk.

The Keto Diet gave us so much over the summer - I am forever grateful...

The Diet must be regularly tweaked and monitored very closely by a supportive and knowledgeable dietician. There truly was no support from ours. And when Destiny's condition spiraled downward, there was no support. She would not even be bothered to help me make Destiny's meals dairy-free or talk about how to ease her reflux.

I tried and tried to tell this dietician that eating meals triggered seizure clusters and tummy pain and reflux, but she insisted on communicating with me only at 3-month appointments, and then she would just look sadly and say "I don't know." I kid you not! She wouldn't tweak the ratio or advise me. I believe, with a real Keto team, the Diet would still benefit Destiny - as it did up until she got sick in September.

Originally, I wanted to do the Ketogenic Diet to get her off the meds. Now, at this point, being med-free is not realistic and all I really care about is giving her a little happiness, and bringing as much 'normalcy' into our little family as possible.

These past two weeks, Stripentol has given Destiny moments of extreme clarity and better seizure control. It's almost as if God is assuring me,

"Your Precious is still here, be patient, give these good meds time...this is a preview of what's to come."

So, on Thursday, Desty ditched/fell off/was gently pushed/leapt off the wagon and we all celebrated with lunch at Fridays (after she slept through her entire Keto appointment ;-) LOLOL!

I have the feeling Destiny's medications are working better without the ill-administrated diet. Seizures have improved a lot in the past week, but Destiny has been SEIZURE-FREE (at least noticeably!) for two nights in a row! Do you know how drastic that is?? Two weeks ago, 50+ seizures at night were the norm. Daytime: she still requires a nap in the morning, but any daytime seizures are very mild (the fact that I can consider any seizure of my child's 'mild' makes me want to cry...but it's true!)

She's engaging more and more; she is awake more. She is still regressed developmentally and behaviorally, but Desty's increasing moments of mental sharpness (peaking between 11PM and 1AM!!!) are priceless! And, of course, with sharpness comes natural Destiny sass! - it makes my heart sing!





Here's to Destiny Ann!



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Introducing...The Wings for Destiny Auction!

Thank you, friends and thank you God for continual strength and support! I'm scared and lonely only for a moment, and then magic happens...such as this very special auction on behalf of Destiny. My gratitude is immeasurable, truly, at this point, for Emily's goodness to us, and too, for all of the wonderful vendors who don't even know us!

Please check out Bright Eyes Designs and the auction items on Facebook....

Be the first to bid on October 30th, when the Wings for Destiny Auction opens!

From Emily: When I started Bright Eyes Designs, it was a way to get creative, cover the costs of my craftiness which I was just uncovering, and to have some fun with Social Networking. I have enjoyed finding my creative bone and teaching myself how to make new things. Most the time my family tells me that I have bitten off way more than I can chew-and there are days I believe them! At Bright Eyes Designs, I offer something for just about everyone, from handmade goodies for the little ones, to custom quilts, and Weight-loss/Healthy living products! Even if I don't have it, I know where to get it! Now that Bright Eyes Designs has grown, I find joy in doing what I can, when I can to give back. I know that my shop is not the biggest, or the most well known, but I enjoy spreading the word the best I can.
I don't personally know Destiny, or her family. I have no personal experience with Dravet Syndrome or what daily life is like with this condition. What I do know, is that I wanted to help. In whatever small way that I can, I want to help. I have known some of Destiny's 'extended family' almost my entire life. I have laughed, loved, and cried with them. When I was introduced to Destiny's situation via them, I knew I had to do something. Through them, I can get a glimpse of just what this diagnosis meant to them. Through them, I can see that this medication is so very needed. It is my hope that through this auction, we can raise enough money to help alleviate some of the financial burden from this vital medication. It is my hope that through this auction, we are able to further Destiny's reach in helping to raise awareness for this disease, and the medication needed to treat it.

I want to thank each and every one of the vendors who have donated their time, supplies, and finished products to this cause. Each of them are such amazing people. I know each of them and count them among the many blessings in my life. Please, if you have time, visit them and let them know how grateful you are for their kind and generous donations. The list of donations is constantly growing, so please check back often.

I have provided their links with the picture of their items donated in the auction, found at Wings for Destiny Auction.

Again, bidding begins October 30th!


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