Yes, for those of you who are dinosaur fans, I am indeed quoting Dinotopia.

Adahlia is a dinosaur fan. We have a pop-up, touch-and-feel, interactive book that features dinosaurs. And boy, are there ever a lot of dinosaurs! They must’ve discovered at least 10 new types since I was a kid.

Anyway, her favorite page is one of an allosaurus that pops out at the reader. It used to scare her but she liked it… She would blink rapidly and pull away from the book as the page opened to him, but then she’d keep going back to it, like she couldn’t help herself.

Now, he doesn’t scare her anymore. His head and torso and right foot are currently held on by about 8 layers of scotch tape. His left foot is gone.

She has no concept of ruining something, or saving it so she can enjoy it in the future. Life presents her endless objects of interest. Her favorite things she destroys with fascination, and moves on.

I have a theory on god, you know. I imagine existence started out with the mentality of a child, like a child itself, and so first, on earth, created big huge crazy things called dinosaurs.

Roar!

Then, that got a little boring to a maturing creative force, so the slate was cleared to live on earth as human, capable of intelligent, and foolish, creation and destruction on a whole new level. Creatures with a conscience who could create new problems by devising solutions. Creatures with an appetite for knowledge, full of curiosity, and capable of wonder, hope, and despair and potentially knowing peace.

…

That’s not really what I intended to write about; its an old fancy of mine that just kind of came out. And it just so happened to bring us back around to the title. Isn’t that beautiful?

As I once said, as a kid, to my older sister: Everything moves in a full circle.

…

Ok, what I wanted to say is this:

They have scheduled a surgery for me for early May, to place stents in my ureters to protect my kidneys while they try to figure out a diagnosis and plan. To me, this means I have 3 weeks to heal myself. I would prefer not to undergo surgery because it would affect my ability to care for Adahlia, and she needs me. So as far as I’m concerned, I’m already better.

Adahlia is scheduled to start a regimen of steroids after her 1st birthday. Apparently, nearly 80% of children with DBA who go on steroids end up being able to make their own red blood cells, and they can be weaned down to just needing an extremely small dose of steroids daily or weekly to maintain production. What is interesting is that there is no medical basis for this phenomenon. As a genetic disease, it doesn’t make sense that steroids could override or reprogram genes, if the problem is indeed a faulty gene. And some children need such a minute dose of maintenance steroids that the dosing is practically homeopathic- so small, that the amount of physical medicine should not actually do anything at all, not to a normal, healthy person.

And yet, it does. It saves their lives.

Hmmm.

Even more amazing, some of these kids then end up being able to come off the steroids altogether. There’s no timeline; its unpredictable.

(Interestingly, and sadly, the disease can come back out of remission, too.)

The bottom line is that something a little stranger than a matter of straight, simple genetics – if this, then that – is at play here. Even within a single family, if two kids both have the DBA gene mutation, one may express health problems associated with DBA (which can range from mild to severe) and the other may appear completely healthy.

With only 25 babies worldwide born with DBA each year, it makes this an extremely rare disease, and therefore, one without a lot of studies and answers.

What this means to me is that we have 3 months for Adahlia to be cured using natural and oriental and spiritual medicine, before we will need to choose to expose her to steroids.

Right now, stop what you are doing and see her as fully healthy, right now. See us as a healthy, happy family, going out into, exploring and contributing to our world, right now.

Thank you for blessing our healthy, happy, beautiful child with your love.