You know when you really wanna do something but it seems like such an huge undertaking, especially amidst all the tasks you HAVE TO complete just to keep your world turning, and so this undertaking becomes a tumor-like guilt task, always applying almost unbearable pressure on your brain and then you just begin to resent the thing you wish you could do, and you really do NEED to do it?? Well, that is my relationship with Destiny's blog!
Instead of writing the perfect "Blog Rebirth post", I have decided to merely offer a brief update on Destiny, and her life with Dravet Syndrome. Maybe if I can write this initial post, it will give me a jumpstart for more posts...
Thanks to so many of you who made sure Destiny had her medication from Europe until Colorado Medicaid figured out how to cover it mid-2012!!!! Thank you!!!!!! Life has been sooo much better with greatly reduced seizures and more cognition! My happy girl has been back and active as can be! - comparably! Of course, she has good days, not-so-good days and really difficult, scary days. To me, the most frustrating aspect of Dravet Syndrome right this moment is definitely the secondary conditions that come along with this ugly syndrome.
That said, Destiny LOVES LIFE and doesn't usually let it bring her down!
If you are in the position to do so, we are in need of more donations. It's a particularly difficult time for us financially. In January, this beautiful 7-year-old weighed 31.5lbs, and was facing possible g-tube insertion. I revved up and quickly learned to create healthy fat-filled nourishing well-rounded meals. Soon after, we discovered she has sensitivities to sugar and gluten, on top of being lactose intolerant. Needless to say, feeding Destiny takes a lot of money and creativity!!! I'd say ~70% of what she intakes is from smoothies, soft (super-food infused) banana bread variations and nutty cakes. She is also BPA-free, rarely eats anything processed, and she is on a number of vitamins and supplements. My girl now weighs 45lbs!!! I have noticed when I slack even a little bit, her weight just plummets. This child requires an incredible amount of good fat intake.
I have many stressors - and I choose feeding Destiny and Benny and nourishing both their bodies and soles before all of the "external" stuff, I.e., bills, rent. My kids come first - ALWAYS!!!!!!
This summer, I have the additional expense of supporting amazing teen "Mommy Helpers" and wanting to make as many memories with my kids (this month with Desty, in particular) as we can. Not extravagant by any means, but camping, taking Destiny to meet Santa at The North Pole, flying with them on A Giant Canyon Swing (Desty is actually tall enough!!!), fishing, playdates, and little spontaneous adventures!
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