Let them eat cake!....oh no! not CAKE!

(photo by NBear Leibowitz)

...CUPcakes, that is.

There is nothing more "horrifying" than seeing video of your child munching on a Safeway-bought cupcake with the rest of her classmates, especially if she is on a gfcf diet. I mean, sure - it was somebody's birthday and NBear was an active participant in the let's-belt-out-the-happy-birthday-song part, but oh...

As soon as the Huz said "NBear BETTER not be eating one of those cupcakes - if I see her eating one of them, I am going to be so mad! Everyone in that classroom was notified of her diet and..." the camera (as if on cue) panned to a giggly NBear, Safeway cupcake in hand, licking the icing (dairy, no doubt) off the top.

I didn't think it was possible for the Huz to turn any paler when he saw that.

But, he did.

"Hey, at least Mrs. A caught it (there was visual evidence to prove it) and threw it away - you've got to commend her for that part!", I added in meekly.

Silence.

Fade to black.

Ah and Oh

After reading this interesting post by a co-blogger, (I must admit I have yet to watch the youtube vid that accompanies it) I was filled with both elation and devastation.

Ah. The light at the end of the tunnel has suddenly become a tad brighter for those of us who have been searching for answers. (If there is any true substance to this interview?) Oh. I was the parent who said "Just give her ALL those shots at once - I really don't want her to come back and experience more pain!" I swear, if there was ever a visual in my head that was clear as day, it is of the Huz and myself standing in the Kaiser vaccination room - a baby NBear laying unsuspecting on the bed - and a line of freshly uncapped syringes on a blue tray next to her. Five of them.

People often ask themselves what superpower they would want if they could have it.....

No rocket science needed here to know mine. :(

I know, I know - it's not my fault, how could I have known, there is yet to be any rock-hard evidence for what causes it....we've all been comforted by those thoughts one time or another, and truly and honestly, I am nothing but thankful for the kind people God has sent our way. It's just that - not a day goes by when I wish we didn't have to prepare any medications for her, when I wish she wouldn't have to miss out on all the gluten and dairy (and egg) goodies other kiddies were enjoying, when I wish SOMEBODY - ANYBODY - could have told us that something as "normal" as vaccinations should be taken in stride........so yes, I know. *sigh*

She has come such a long way, dear friends. Many of our children have, and there is much to celebrate. Forgive me for having a day like this one. Ah, I'll get over it :)

...............p.s.
As I type, we are enjoying a home-cooked meal at LaVieJoie's abode in celebration of her hubby's birthday. She made the effort to prepare a gfcf chicken dish for NBear - which she first marinated in fresh orange juice, salt and pepper, before frying in olive oil. The chicken lasted less than 3 minutes on NBear's plate. :) Thanks, Joie!

Order UP!

FINALLY - this non-cooker has found her

saving grace!

Some of them are even EGG-free! Yessssssss!!!!

I'm okay! Really.....I.....am....

Our minds are so full of information right now, it wouldn't surprise me if brain matter started oozing out of our noses.

Meeting #2 with Dr. Mielke was all about answering our questions (phase 1), going over the lab results (phase 2), and getting the rest of our pharmacy goodies (phase 3) - all in a mere two hours. Needless to say, phase two was my least favorite:

So - she hands us a stack of papers and said they were NBear's lab results. You're kidding, right? - sneered my inner dark self - this REAM looks like the rough draft of the book "War and Peace"! We're going through all of this? Shouldn't you have allotted 6 hours, then? How could 1 stool sample, 1 hair sample, and 3 urine samples have come to this? *side: I must remind myself to post about THAT experience as well! We could all use a hefty laugh.* Alas, all I had the strength to say was, "Oh." Here is what we (hubby and moi) were told, or rather, how we understood what we were told:

*NBear had some serious viral issues - results showed that her digestive tract tissues had some serious inflammation going on

*As for food allergies, our hearts sank when EGG WHITES and YOLK were on her "not-to-eat" list. There go the morning over-easies, the gluten-free cake mixes.....*sob*....also on the list was wheat, rye, cow's milk, and our good friend, gluten. Incidentally, her body's reaction to gluten was so high (she scored a 0.859 on a scale of 0-1!) that Dr. Mielke wondered if the poor child could possibly even suffer from celiac disease. (same link, but look at the 5th paragraph. *lol* Notice the last sentence there? I hope the Pope plans on hiring some people from the "Gluten-Free Eucharist Ministry". Soon.)

*Yes, metal toxins - mercury, lead, arsenic - were still an issue. Chelation was definitely going to have to happen, if we wanted to move forward. I'm not going to lie about my fear of chelation. How can I possibly be 100% FINE when there are things like this and this? OMG. We did receive a test kit - called the Challenge kit - to see if NBear would have a "positive" reaction to the chelator known as DMSA. (I'm assuming that "positive" in this context does not mean happy faces and plus signs, but rather if:

1) she is willing to take the chelator orally, despite the fact that its sulfuric content matches that of a rotten egg...in both smell and taste, I may add. *clearly remembering Dr Mielke's face as she stressed the words "...it...tastes....hooorrrrriiiibbbllleee!"

2) she does not have a bad reaction (a bad reaction to ingesting rotten egg-like powder? Now who ever heard of such a possibility?)

3) it works for her. Alas, some chelators can be picky with the metals they choose to adhere to, and may not secrete them as planned. Let's hope NBear's metals are high on the attractive list .

Would it be so bad to ask all of you who read this to please ask the big G-man (aka J-man, HS-man) to keep her in mind when I administer the test tomorrow? *groan* I'll also have to follow her around for 6 hours after the capsules are taken. Just call me Princess Urine-Collector. *Where's the catheter when I need it?*

***Last Word:
~ Two teary tantrums and one "woe-is-me" speech to hubby later.......and I am fine. really.
Did I also mention that my wallet is now concave? That book idea doesn't sound so bad after all.