good--bad days

Thank you, HopeFaithBelieve, for this - another story of yet another child whose life (we all hope) will one day be our child's.

Or at least, I do. :)

It's funny because just now I asked the Huz, "Honey - when NBear has her BAD days - are they GOOD--BAD days?" I laugh just seeing myself type that up, knowing how ridiculous that may look to anyone else. RIDICULOUS! It's either good or bad, right? Black or white? Hot and Cold? Yes and No? In and Out?...oh wait - too much Katy Perry does not a good blogger make! (NBear LOVES that song to death, by the way).

The Huz replies by telling me that she can at least verbalize what she wants now (I know), as opposed to being non-verbal (I know). She knows what she wants, and how to express that (I know), and for that we should be thankful (I am). *sigh* When my friends ask me how she's doing now that she's pretty much off her regular biomeds routine, I answer with a very honest, "I don't notice too much of a difference - I mean, she's still doing fine!" - and then I need to step back and look at the bigger picture: can she be doing BETTER? Did we make a mistake and pull her out too early? It is nerve-wracking indeed.

My gut tells me that we need to wait to replenish our funds first, before plunging back into another DAN! session. But, is it doing her any good?

THAT - is what kills me. :( Bummer.

You Go!

This woman is the BEST.

Meet Dr. Leony Go, from the Fremont branch of Kaiser Permanente.

She has been my childrens' ONLY pediatrician. She is not only caring and easy to talk to about normal issues, but provides a TON of support when it comes to working together with Dr. Mielke for NBear's benefit.

I received a phone call from her the other day to discuss the most recent test Dr. M. requested, and she was all ears about how the whole DAN! experience was going. (So tell me again what DAN! stands for? I'd like to try to understand as much as I can.) Of course, like I do, she worries about chelation therapy. In the end however, her wonderful words were, "As long as you feel you are doing what's best!" :)

Need you ask if I'd totally recommend her for any other A-Club members?

...and then, the starting pistol was fired...

My daughter has autism.

She is six - will be seven at the end of this month.

I do not want to start telling her story from the beginning, simply because she is not the same person she was when she was two, or three. The day of her fateful diagnosis, the times she would grunt and throw uncontrollable tantrums, and the devastating moment we realized she had stopped saying words - and would stop saying words for almost a year - are no longer relevant to the story that her life is telling now.

Cured? No - not at all. Far from it. This is not going to be a story of immediate rewards or lightning-speed miracles - though one may hope for them, of course ;) Instead, I hope (like many parents out there) to GIVE hope, and to open more eyes to what you may want to explore if your child has autism. (My newfound mantra is "Leave no stone unturned!")

This all sound familiar? It should. From the depths of my heart I thank Jenny McCarthy for writing "Louder than Words" and sharing her experiences with her son, Evan - and for the many friends who told me about the book's existence. (And to K, who bought it for me...do you realize how precious it is to us now?) See it here.
http://www.talkaboutcuringautism.org/jenny/

In the past few months, we (hubby and I) have done the following:
* visited Dr. Mielke - a DAN! doctor in Pleasanton

* watched NBear get blood drawn both at that lab and at Kaiser
* collected urine, hair, and the ever-favorite stool sample for her biomedical testing
* started her on an anti-fungal called Fluconazole (Diflucan)
* began her biomedical treatment with an arsenal of supplements, which include: Probiotics, Cod liver oil, Nu- Thera, (she's not on the SUPER Nu-Thera, as the link shows), Trace minerals, Magnesium powder, and Calcium powder. The last of which will be the infamous B-12 shots, which we'll have to administer pretty much like an epi-pen.

* started a journal to note any reactions or changes NBear experiences during her treatment

* said goodbye to a lot of our savings.....without caring ;)

......SIGH.....

My energy is drained right now. Time is 11:43 pm. I promise to continue as soon as I can.

The important thing for everyone to know right now is that we've awakened to the sound of the starting pistol.

Our marathon has begun.