Wednesday, October 26, 2011

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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Sunday, October 23, 2011

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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Wednesday, October 19, 2011

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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Tuesday, October 11, 2011

It Doesn't Take A Miracle...

It Desn't Take A Miracle to Make A Brand New Start..." Please watch this touching video...

Destiny is right there smack in the middle, doing her very best. This was the first song they practiced today in Lemonade!, and she did better than I have ever seen her do, right here. (Then she crashed hard but that's ok! - I have this video clip! ;-) Ok, I sobbed through this song today!

Let me give a brief description of Destiny past two days. On Sunday, she attended church with her girlfriend and had a seizure while there. Her neurologist calls this seizure type "obtundation status" - if you know what this means, please clue me in ;-), and apparently I have been grossly underreporting her seizures...for another time...

So, Sunday was a fairly horrible day for the most part.

Yesterday, however, Destiny was clearer than she has been since early September when she caught a cold and this downward spiral began! It was stunning - my heart was/is leaping for joy. Cognitively she seemed to have jumped 5 steps! Her personality was unleashed! This is Stripentol at work, my friends! Yesterday was day FOUR on STP, and this is the affect we all pray for!

She was glowing and full of life, and just a kid! Her genuine smile, eye contact, quick responses...All day long! She began her Reading Eggs curriculum , doing most of it independently, and took a magical bike ride...

She then went to Creative Arts and finished making this fabulous mask, and a very special bracelet for me. We all went to the grocery store last night...and, for once, it was so easy and totally enjoyable! I was wishing the day would never end. We danced in the dark parking lot on the way home!

And then, wouldn't ya know it...last night was a med titration night, so we had to adjust doses :-( ARG! She's been really lethargic and sluggish today (to be expected), EXCEPT for the first 20 minutes of her musical practice. In two more weeks, Desty's medications will hopefully be stable, and yesterday is just a forecast of the happy times to come!!!

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A Consistent Soul Believes in Destiny

A consistent soul believes in destiny, a capricious one in chance.
A quote from a Benjamin Disraeli

Recently I was asked if I named her Destiny because of this whole thing. I laugh every time I think about it! Destiny has always been my Destiny, even before she was conceived -- she was my Destiny. Her name bares absolutely no "Dravet significance". It's much deeper than that ;-)

Destiny has Dravet Syndrome...unbeknownst to me until six months ago! This Syndrome doesn't change Desty's past, but it does change her future...Why? Because having a cause for seizures, etc., means that we can treat her medical needs properly from here on out.

You and your friends, and everyone that knows about Destiny, sprinkles a little bit of magical fairy dust on her wings, with every thought, every prayer, every ounce of love, and finally, every donation to her medical fund.

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Friday, October 7, 2011

We Got Stripentol! Plus, A Video Thanks!

Yesterday we had the medication, Stripentol, overnighted! We received it this morning and Destiny received her first dose. It will take a few weeks for STP to be fully effective.

My heart is especially heavy today...I lack words right now...I'm sorry!
Please watch our video clip that we made for YOU...

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An Aunt's Plea

From Aunt Chantee

I have loved reading all of the stories on the blog about Destiny. When Tammy asked me to write about some of my favorite memories I thought it would be very simple, however it has not been, I think mostly because I feel like I shouldn't have to be doing this to raise awareness and funds for life-sustaining meds.

When you become an aunt, all you see is a future of spoiling the kid and teaching them lots of naughty stuff (which I still do). As the other stories have said Destiny is a special girl that will touch your life and heart, but I think many people would say the same about many other children, and Destiny is NOT other children. I have tried to think of a way to make my words help someone understand what a joy and true delight this little girl is. I give up! I have been lucky enough to know Destiny from day one, and even before that. I was shocked to find out Tammy was pregnant again just months after Benny was born, but secretly I was happy and hoping for a girl.

Before Destiny was even 1-year-old, her family moved from Utah to Colorado, which was very sad; Destiny and Benny were a part of my daily life. It has given me a reason to travel, and I find I can still sometimes spoil through the mail. I have made it out a few times each year, and they come to my house (to give their mom a break) a few times each year.

Destiny was here just last Christmas. We knew she was having seizures (only two major seizures while she was here - one at my mom's feet) but we didn't know
about the Dravet Syndrome. She still seemed like a mostly normal functioning little girl. It wasn't until her visit this summer that it really started to sink in. Now I cringe as I log on to Facebook and read the updates. The texts I receive from Tammy have changed drastically from happy little update about the kids and what they are doing that day, to updates about Destiny's condition. I feel helpless here on the other side of the mountain.

PLEASE take time to read ALL of our stories and PLEASE pass them on. Please help and pass this on to everyone you know. The goal is to raise money for Destiny's medication but the least we can do is raise awareness. PLEASE understand that these meds mean a slowing of the multiple daily seizures and a slowing of Destiny's regression after the seizures. Try to think about this from a family's perspective, how it effects their daily lives, and thank God your only reading this blog and not living it.

Now for a Destiny story.

This June I had a daughter named Sophie. When Destiny came to visit it was like she had a real life doll. She wanted to hold her and carry her all around. When the baby was sleeping Destiny would sneak into the room to check on her many times always being very quiet. I think the highlight for Destiny was getting to give Sophie a bath in the sink. Destiny was so excited and kinda sang a little song while scrubbing the baby. Now, Sophie cried the whole time which is odd for her - she loves bath time, but it was worth it to see how happy Destiny was with her real life dolly. She even helped lotion and put a new diaper on the baby, being so gentle the whole time. I cherish the pictures we have of the two little ladies together and I feel grateful that my child has such a special cousin.

NOW let me just finish by telling you what I want! I want Destiny to be able to grow up and babysit her cousin and teach her all of her little songs and dances and even how to be a little naughty sometimes! Destiny has so much to offer. PLEASE help us get the medication here ASAP! We are asking for this help because WE NEED IT! Thank you for taking some time to read this, making a donation and passing on the many others that may be able to help!

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Thursday, October 6, 2011

Please Help Now!

After over 50 seizures last night, I purchased Destiny's Stipentol capsules today - they are being overnighted. Desty took a 2 hour nap this morning and had over 30 small seizures. I couldn't have purchased this medication if not for so many of you! Thank you, friends, for making this purchase possible!

Apparently, if she hadn't already started Clobazan (the lesser drug), three weeks ago, I might have been typing this from PICU. Please pray!! Hopefully, the Stripentol is desty's "miracle", like it is for many kiddos.

Please consider donating or donating again now!

With Love,
Tammy, Benny, Destiny and Tank, the Wonder Dog

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