without you...

My husband listened to my rant about NBear's increasingly "un-NBear-like" behavior and said, "It will get worse before it gets better". How much WORSE? Will she be ripping doors off their hinges next? Screaming at the top of her lungs like she did when she was two? Running crazy laps in the living room for no reason? (hence "crazy") Crying until our home feels like a flooded Florida beach house? I don't know what to do, I don't know what to think, but I do know what to feel: powerless. (By the way, the prescription meds she recently started - see pic in the previous post - is a milder form of the anti-viral drug VALTREX!)

It's times like these that help me remember the one sure-fire way to "liven up". It's a simple exercise that reminds you to celebrate your child, and the everyday gifts they give to you. I hope you'll join me. Follow the directions below! *teacher mode kicking in...has summer ended already???*

1) in your head, complete this sentence:
Without (name of child), I wouldn't _____________.

2) write your sentence as a comment if you wish!

3) for those of you who have more than one child (like me) feel free to write (or think of) a sentence for each one!

4) last - put an asterisk (*) by the name of your child(ren) if he or she is a special needs individual:)

Here's my list. Enjoy:

-- Without *NBear, I wouldn't have known what it felt like to have my heart grow so much, it's become too big for my chest. :)

-- Without MBear, I wouldn't have known that duets (on the car ride home) can be extremely stress-relieving, especially when the better voice belongs to the one riding in the car seat. :)

-- Without SBear, I wouldn't have believed that "calm babies" really DID exist, and are capable of smiling for hours on end! :)

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!

S-words

To date, I am still sans suppositories and sanity. (the latter not being too much of a shock)
Called the pharmacy (love them) and it seems there was some sort of misunderstanding:

*Yes, a prescription for chelation suppositories. Dr. Mielke said she would call it in on Wednesday. [it was now Saturday]*

No, I'm sorry. We haven't received the call yet.

*Wha-?? Really?*

Really.

*Oh. [perplexed pause here] Oh. So I guess I have to call her office...?*

Yes, I would do that! I'm so sorry. (said hurriedly, but with a cheery voice, nonetheless)

...and that marked the end of the conversation. Oh well - it will just put us back a weekend, I suppose. I'm not exactly looking forward to this "experience" anyway. *shrug*

In other news, I gave NBear an MB-12 shot (for the first time) on Saturday. Call it the need for adventure. The Huz took SBear to her "gin-as-tick" class and before they left, I nonchalantly asked him if he had already administered the shot. No, not yet. I smiled to myself as the wheels in my head began to sputter and whir, and asked him if I could do it. His head snapped up when he looked at me. If..you...want to? That was all the push I needed. :)

I soon realized I needed more of a shove than a push.

For starters, NBear was already AWAKE. Huz always did it when she was asleep. (Except one other time, and when the memories of THAT event came back to me, I wondered why I ever decided to volunteer for this) In that memory, we asked NBear to lay on her tummy on the couch. Her constant whining and turning to see the oncoming needle was enough to cause us to heave sighs of defeat. Huz got it in, though, and that was that.

But that was HIM. Calm, patient, easy-going, and STRONGER than me. Enter me (think on-edge mommy with wailing 7-month old at her hip) and it no longer becomes a pretty picture.

me: Come on, NBear - time for "owie" butt, ok? *still wonder why it was an utter success at the get-go?*

NB: No! No owie butt, no!

me: It will be very fast! Very fast! Just lie down he...

NB: No lie down here, no! I don't want to lie down...I don't want owie!

(to read the dialogue in its entirety, simply re-read the above a hundred more times)

Thank goodness I don't have a fear of needles. I do have a fear of accidentally BENDING needles when the subject of your "poke" turns into the human jumping bean.

The bottom line (pun intended here) *lol* is that I DID IT! yes.

When H and Sbear came home, I managed to make everything look like a piece of cake. You gave it already? I thought you were going to wait for me? I waited for the air of confidence to fog the entire kitchen before I replied. "Nah - I managed to do it!"

I know he saw right through me. He managed a smile, though!

another appt, another round

Saw Dr. Mielke yesterday afternoon, and the DMSA test we gave NBear a while back was not as successful as she had hoped. Are you kidding me? All that pee collection for THIS? She said something like, "It didn't show a big 'pull'", which basically means it didn't do a good job of extracting a large amount of the metal toxins in NBear's body. *feel free to gasp for air here*

So now what?

"I'd like to do the test again."

I felt the color drain from my face. Sure, the Huz mentioned that NBear had thrown up a little bit during the testing period (I swear, it was just a little - I personally feel she didn't lose any of the DMSA's effect) which then led to Dr. Mielke's concern that some of the meds must have come out, thus affecting the level of chelation.

"You mean...you want us to give her the tablets again? Where would we be right now if the test results showed a good pull?"

She said we'd be looking at scheduling a chelation program for NBear, according to what our financial situation was. So you mean you also have a program for "broker-than-broke"?

I'm sorry, but I wasn't happy with this appointment at all. I know, I know - Dr. Mielke doesn't write up the test results herself, but something just irked me about how all this was being handled. First of all, if the kid THREW UP because of the tablets, why would you want to try that route again? I didn't have the heart to see her go through that, even if it was just a tad. Second, I was not about to shell out major bucks for another follow-up appointment just to hear the same thing! So...I did what i thought was best.

I suggested we try another route.
Suppositories.
Yes, suppositories.

Poor NBear, but I just need to know that another route will be better, even if this is a bit invasive. Our other choice would be via I.V., and to be quite honest, I wouldn't have a problem with that either. But our kid and our wallets sure would...

Those stupid metals. If I could, I'd pull an "Inner Space" move and vacuum them out myself.

As always, wish us luck.

*If there are any parents out there who have tried this with their kid - I need you!*

other things...

Checked off MommyBear's "To-Do" list:

*forget to give NBear one dose of glutathione lotion AND Probiotics, and regret it for the rest of the trip :(
*share NBear's biomedical treatment with a stranger at Disneyland (You know, Jenny McCarthy's book?) - Smile and get even more excited when she mentions that she too is a teacher, and shares a concern for parents who are afraid to exit the world of denial!
*give NBear a few AFP tablets - we know she may be exposed to foods with a certain amount of gluten in them
*try to maintain composure when the kids tear the hotel room apart
*be creative when writing a comment card for the hotel

snippets (did I spell that right?)

These were checked off NBear's "To-Do" list:

* pack Woody and Jessie (and later find the absolute BEST Jessie cowgirl hat ever!!!)

* go with Daddy to get the Disability pass from the Disney City Hall

* enjoy my favorite rides (carousel, Dumbo, Snow White, Casey Jr. , Pooh- to name a few)

* try out new ones (Haunted Mansion, Toontown roller coaster, Indiana Jones)

* tell Mommy that I NEVER want to ride Pirates of the Carribean or the Haunted Mansion again! (she was sad because she loves both)

*do not be upset when we can't ride "It's A Small World": when something is closed because they want to 'improve' it, that's actually a good thing!

* take pictures with the infamous Mouse!

* give Minnie Mouse a hug (and make sure MBear gets to hug her too, even if it's just her leg)

*enjoy the fireworks without "shutting down" *yes!* (cover ears, though)

*watch Fantasmic -- I'm glad I saw Woody and Buzz during the finale, as it took a lot of my fear away. Darn loud noises!

*explore California Adventures (day 2)

*hang out with Auntie CP and Uncle AP

*scream in delight as our Sun Wheel gondola rocked back and forth (and wonder why everyone else on it seemed petrified with fear)

* watch Playhouse Disney Live on stage and not care if I sing louder than the cast members themselves (added note: Mbear was a total killjoy, refusing to even dance! Must tell her to have fun and let loose next time.)

*ride new rides (Toy Story, Monsters Inc., Ariel's carousel, Sun Wheel, Bug's Land rides)

*get angry at the fact that the Pixar parade included being squirted with water! (how can I be able to focus on Woody and Jessie if they have water pistols pointing at us?)

*go on Soarin' Over California TWICE! (and absolutely LOVE it!)

*get Daddy to convince me that getting even WETTER on that rapids ride would be considered "fun" (glad mommy packed those extra clothes!)

*go back to the hotel for a night swim...and watch the fireworks (again) from the pool!

*smile and thank God for another wonderful - actually, for an even BETTER - summer trip!

...must...get....energy...

hello friends.

we have returned from the land of a million dreams (at least that's what the celebration is this year - I'm still incredibly jealous of the family that WON the one-night stay in the park's suite. Those buttheads!).
the huz is passed out on the couch. I doubt he'll be waking up anytime this month.
NBear and MBear - who enjoyed the long car nap - are bouncing off the walls in the next room.
SBear is carefully exploring the carpet she has not seen in three days. I could have sworn I left that chewed-up, saliva-drenched toy here...

Et moi?

...I am just stopping by to say that I am alive. not kicking, but still alive.

I will be my chipper self soon, I'm sure, and set this keyboard ablaze with tales of NBear's adventures this weekend.

But until then....does anyone know where the nearest pit stop is???zzzzzzzzzzzz.........