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.

Three things:

Because I'm in a Lovely Listing (otherwise known as Energetically Enumerating) mood, here goes:

1. Having had NBear on biomeds under the care of one Dr. Mielke, it's become easy for us to see when a yeast overgrowth is occurring. (3 things to remember, as per Dr. Mielke - stimmy, silly, spacey) So, it looks like we'll be following what Jenny put in her book - To remove Evan's candida, we did start him out on a prescription of Diflucan but after a few weeks, I switched him to a natural supplement that did the same thing. It is called ThreeLac, and if you Google it, you will find many places that carry it. (page 200, Louder than Words)

2. We went to my mom's apartment yesterday, and - for the first time EVER - we both noticed that NBear had NOT once rewound the Blues Clues video she was watching. (Mind you - this is her routine as soon as she enters the door: say hi to grandma, rush to the TV and VCR *yes, VCR - remember those?*, pop in the video, and rewind certain scenes numerous times until we leave.) It was a good day!

3. This post was beautiful. It features a teenage orator named Soeren Palumbo, taken during a speech he makes during (I'm assuming) a student body assembly. He doesn't talk about autism specifically, but about disabilities as a whole - and how the world (as we know) can be a cruel, unforgiving place. I won't tell you anything more, in hopes that you will watch it in its entirety. Don't let the shaky camera in the beginning turn you off to the rest of the video!

What are YOUR three things? :)

Tropical Lady

*survive a 12-day trip to much-loved Guam (traveling with the three kids!).....check

*take enough motrin to tranquilize an elephant when dealing with the onset of sinusitis, and MSG migraines - it was the tropic's way of saying "welcome back, we missed your occasional misery"...check

*fight the urge to reschedule the flight back to CA because of the sudden appearance of the(insert expletive here) stomach flu.....check

*report back to work the day AFTER your early morning arrival from a 12-hour flight, which crossed over the international date line. May I add that being jet-lagged was worse than any hangover I had ever experienced.Ever......check

*crash and burn again in two days, while experiencing excruciating flu-like symptoms. Listen in utter disbelief as your doc tells you that you have strep throat.....check (Mr. Magoo has better luck than I do!)

*begin to feel better, and BLOG.......check :)*sigh*

Alright - there you have it! My excuses - reasons - for not setting this keyboard on fire anytime sooner. I'll tell you, though - my NBear has certainly fared much better than I had! She had a great time on the flight, and was - hands-down, the best behaved of the three :) We won't count the last airplane ride, when we finally landed at SFO. She was so tired and wanted to sleep, she refused to disembark!
Helpful hint: Continental Airlines offers a gluten-free meal on some flights (unfortunately, it included some egg, which NBear is allergic to)

Guam was an absolute blast for her and sister MBear, and I promise to post some pics soon. Who wouldn't enjoy a vacation jam-packed with pools, the ocean (what mommybear calls the REAL KIND!), and an endless supply of goodies from relatives? The Huz and I had our share of heartwarming moments whenever we watched our Tres Marias frolicking in our old childhood spots! My little corner of paradise did have its share of flaws, however.....

1) It was almost impossible to continue NBear's GFCF diet 100%, because there weren't really any grocery stores dedicated to that kind of lifestyle. Let's just say the AFP tabs (as I've mentioned earlier) were a life-saver! We did find that there was more awareness about organic and healthy foods, and loved Healthy Hearts :) *Thanks, CC for the tip* We found most of NBear's Whole Foods skin care products there, which was a relief.

2) Almost everyone we spoke to had not heard of Jenny's book. Not that they had any reason to read it, but it was just funny how you could bring that up here - autism community or not - and someone's heard of it. Hmmmm...perhaps people in good 'ole CA are just exposed to more media tactics than my beloved islanders are! *lol* But seriously - it was just odd;)

3) The autism community back home seemed promising when we saw an ad on TV about some kind of social group - so, like eager beavers, the Huz and I wrote down the numbers and (why am I not surprised?) lo and behold - about all the people we knew, including my in-laws and MissFABulous, knew one of the ladies personally. Welcome to Guam! The Huz was the one who spoke to her on the phone, and even he admits that he may have overwhelmed her with the information he shared about NBear's biomeds. May have? We left her our copy of Overcoming Autism , and hope she is able to find time to read it. It's not a book about biomeds (I'm sure Huz suggested Jenny's bestseller), but it's one I'm sure she'll find helpful. Here's the local website for their social community.

So - if anyone plans a visit to a small little patch of heaven in the Philippine Sea anytime soon, (the food is GREAT!) - don't say you haven't been warned! HAHA!

nite:)
si mommybear

what the heck is hapenning here?

My NBear seems to have turned into the Tasmanian Devil.

Where is the calm girl we had no problems with when we went shopping? We took the entire herd to shop for a dress (for mommy - there's a wedding on Saturday!), and NBear acted like a child who had ingested 2 packs of chocolate-covered coffee beans! She was sooo not calm. I mean, sure - she was also talking up a storm, using great sentences, and had great eye contact, but all that also came with GREAT (uncontrolled) ENERGY!

Yes, of course the Huz also noticed. The poor guy took her grocery shopping today and came home looking like he crawled out of the bowels of a tornado. Perhaps the recent addition of these guys (pictured below) to NBear's program had something to do with it?:

Dear me. I guess I was in a daze when Acyclovir was discussed between the Huz and Dr. Mielke. I actually AGREED to this? *lol* It's used for herpes! And - did you see all the side effects? No wonder why! *groan* I vaguely remember that he wanted to try an anti-viral program on NBear BEFORE chelation, but the doc was quite reluctant to do so. (Something about NBear's immune deficiency not being up to par until after chelation, but in the end Huz was able to convince her to at least try this "switch" with NBear.) So, hello Acyclovir.

These two were also H-man's idea. He spoke to Dr. M about introducing these, and got her "ok" beforehand. I know some readers (like my new friend) have concerns about starting Virastop, but really all I've seen so far is (I'm afraid to say) ADHD-like behavior, confused behavior at times, and yes - defiant behavior. EVERYTHING is a NO. *granted, I love the sentences, but still:

"No! I don't want to go to school! No! My turn for the computer! No! I don't want to take a shower! No! No! NO!"

Oh - we've also noticed a frequent need to fidget with things - our faces, her father's ears (she had stopped doing that for a while), her clothes, to name a few. Seems like her sense of touch is heightened or something??? *sigh*

Hubby thinks it's the die-off from the Virastop. (he said I could quote him on that, so there.)

I'm just hoping it's temporary...................no matter what it is.

p.s. Dear Cult of Recovery - we are also (as shown in photo) adding OLE to this new deal. :) Nice to know we're in this fight together!

enter my silver lining for today

Forget about Shark Vacs and missing adapters!

This evening, when I was preparing to give NBear her meds, I dared to try what only her father had previously attempted: getting her to SWALLOW the caplets.

After a few tries with the trace mineral cap (she'd follow me and place it on the back of her tongue, but when she'd take a swig of her water I could see her tongue move the pill precariously to the right side of her mouth) I decided it was time for some visual and vocal help. (That, plus the poor capsule was getting battered and bruised in there - it was flat by the time she realized what needed to be done.)

Me: NBear.....you need to swallow the water, then aaaaallllll gooooonnnneee!

NBear: *confused look*

Me: *opening mouth wide* *gurgling sound* Cuuuuhhhhheeeeeee? Aaannnngggg Goooonnng!

NBear: *looking in my mouth*

Me: Okay, NBear - you have to swallow the water, and then no more medicine in your mouth, ok? All gone!

NBear: *swallows the water, and then opens her mouth to show that it is.....empty.* :)

What ensues is a crazy mother giving her daughter enough high-fives to last a lifetime. I'd say I gave her more than the number of fans Miley Cyrus has.

Plus, I threw in a bowl of Rice Dream ice cream.

Just because.

OH. Almost forgot - I won't be giving her any more of the large ZEN tablets to take in pill form, though. The poor bear was on a roll when she unfortunately gagged on that one. It took several gulps of H20 and a few extra moments of praise to get her to trust me again. *oops* It's a good thing she has perseverance.

I love you, NBear.

photo shoot

After many grueling hours of hair and makeup, background lighting adjustments, and the pain of choosing the perfect location, it has all come down to this.

Presenting, NBear's biomeds arsenal in all their photogenic glory:

(the newest member to this group is the 200mg of ZEN bottle - Dr. Mielke called these pills "calming amino acids" :) Have they worked? Our answer is yes. NBear hasn't quite achieved her ULTRA ZEN state as of yet, but we'll take it! I wonder if they'll work for me.....

Pictured above is the "needs refrigeration" group. These supermodels were hard to deal with, considering they were extremely picky about superficial details like harsh light, and the amount of time they wanted to spend out of their cool environment. They were definitely a hard bunch to please! (from top: ProbioGold *probiotic capsules*, Glutathione topical cream, and - this was the hardest one to book because of its popularity - B-12 shot.)

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.

tidbits

* today NBear got her NINTH B-12 shot

* it has been 34 days since we started her on biomeds - including the diflucan - and 26 days of taking the full dose of supplements (had to introduce one supplement a day to make sure she wouldn't have any adverse reactions)

* her follow-up appointment is THIS FRIDAY @ 9:30am, with Dr.Mielke (see her website on my list of links), which we're really excited/anxious/nervous about because it's "let's-discuss-her-lab-results" day *breathe!*...thanks for agreeing to watch NBear and SBear, grandma - and an advance thank you to S.I.L.- G for agreeing to have MBear at the bakery! (You don't know what you're getting yourself into, but thanks!)

*and a great big thanks to my friends and family who read this - I trust you will tell anyone who is going through a similar situation that this BLOG is for them too! :)

30-Second Meds

And now, let's put our hands together for America's favorite meds-mixer, Machel Vay!

*applause machine goes off*

Hello everyone, and welcome to another segment of 30-Second Meds, where a good dose, is never more than half a minute away! I'm your host, Machel Vay *beaming smile* - let's begin!

Alright you guys - this is sooo easy, even a man can do it while watching his favorite football game. See-ree-ously! I'm going to need a Nu-Thera tablet, a trace minerals tablet as well *opening bottles and grabbing a piece from each* - you can TOTALLY find all these ingredients at your nearest GNC or Whole Foods stores, by the way, although I was lucky enough to be able to purchase them through my daughter's DAN! doctor.

Hmmmm...oh yes, and let me grab this container of Magnesium powder, and this calcium powder while I'm at it. *balancing each one in the crook of her arm* Whoops - almost lost one there! Maybe I should put these down on the counter...just like that! Haha! Sorry, Giada - grabbed your line there, girl! You know I love ya!

*returning to the kitchen cupboard* No, I didn't forget ya, Mr. strawberry-flavored cod liver oil! Come to mama. Now - you want to get one that says "omega-3" on it - or is that on all of them? Who knows? It's good for you, and the strawberry flavor keeps the gag reflex down. Aaaaalways a Pa-LUS! Okay guys - we're almost ready to start, but keep in mind that there is a last ingredient we'll be needing, it'll have to wait to join the mix until the last second though, because it has to stay in the refrigerator 'til we need it.

'Kay - now you grab yourself a small dipping bowl - you know, like this one *holds small porcelain bowl up*, where you would put a dipping element like peanut sauce or ketchup. The neat thing about this recipe you guys, is that you don't even need to go in any particular order! How...great.....is....THAT!? You just get the right measurements, and BAM! Haha - stole that one from my good friend Emeril! YOU ROCK, MAN! But seriously - you just put everything into this bowl like so:

Open up the Nu-Thera and Trace Minerals tablets, and spill the contents into the bowl. Can everyone say Mmmm...mmm? That looks wonderful already! All powdery and just light and fluffy! Do you see how the light orange color of the Nu-Thera just complements the beige of the trace minerals? Wonderful. Okay, now we're going to need a quarter teaspoon EACH of the calcium and magnesium powders. *dropping those in the bowl* Wow. I mean, just - wow. Now the pure white hues - can you see it? Let's get a close-up right here, camera guy - are just brightening the whole thing up. Beautiful. I cannot wait!

Now it's time for Mr. CLO, or cod liver oil, you know I love those shortcuts - EVOO, remember? *laughing to herself* Let's get a medicine dropper for this baby and measure out 1 teaspoon, and just drizzle it onto our dry ingredient mix. There. Perfect.

Remember our mystery ingredient? *opening refrigerator* It's time for him to make his grand entrance - say hello to Pro-biotic! You'll need one tablet as well. It's really important *opening up tablet and spilling contents into the mix* to remember to save this for last because it really does need to stay cold - probiotics are live cultures, so when they're exposed to heat they don't survive. Think of yogurt, you know? These babies are great in helping with digestion, and just basic tummy health!

*mixing* All.....righty! Mix this baby up until all the chunks melt into the solution - it should start to turn orange, like you see here. Ooohhhh yes! Looks like we've got another winner here! Love it, love it, love it! Now, depending on your kid, use either a regular spoon, or a medicine dropper like we used for the CLO. I know my girl started with the dropper, but once she got used to the taste, she was ALL SPOON, baby. I'm so proud of her! I love you, NBEAR! *blowing kiss*

And there you have it, folks - meds in 30 secs! What'd I tell ya? I'm Machel Vay, and always remember - a great dose, is never more than half a minute away! See you next time - I've got to find NBear! ;)

*fade to black, and cut to commercial on making our vaccines safe*

Has it been that long?

Yikes. Fallen behind on posts - my first dip in the blogging world, I guess?

NBear's BMTs (Behavior...something...something - I'm so bad, but in my field where abbreviations and acronyms rule the world, you can't blame me for forgetting some! Just keep in mind that they are equivalent to aides for children in SDC classes) anyway, her BMTs at summer school were mentioning an increase in her eye contact during activites, as well as less-teeth grinding moments. :)

The BEST thing? None of them even know she's started on this biomeds program.

We wanted to keep them in the dark so they weren't "consciously looking" for improvements (or regressions). We can't keep our smiles off our faces!

*looking towards the sky* Thank you.