How is she?

Shame on me - (You're right, Mrs. C!) I haven't posted lately about HOW my NBear has been doing! So, since I am the queen of enumeration...and okay, I have little SBear comfy in the crook of my left arm, which doesn't allow for thorough keyboard usage...allow me to enumerate, and forgive me (regular readers) if all this sounds uber-repetitive:

1) This week marked week 4 of chelation. She gets her DMSA suppositories on Friday and Saturdays right before bed. The only physical reaction we see is the increase in her nosebleeds. Dr. Mielke said it wasn't caused by the DMSA per se, but by the fact that she was losing Vitamin K in the process. She now gets drops as needed. Yes, they've helped :)

2) Her language has definitely increased. Indeed, it has. Of course, I don't know if chelation is the sole factor for this monumental moment - being that the poor kid has more meds than her grandparents will probably have to take in their lifetime! But yes, even skeptic-at-times mommy has to admit that she has made major gains in this area: she now asks a lot of questions (albeit simple ones), she can answer questions a lot better than she did a few months ago (still working on the "why" ones, but she has been doing well with "what happened?" *biggie!!!*) She plays a lot more with sister MBear, and their conversations are both hilarious and heartwarming:) *must post dialogue one of these days, when I am not suffering from heavy-baby-on-arm fatigue* Perhaps the biggest language aspect I've noticed is her ability to generalize her "tv talk". For example, if she's quoting a Dora the Explorer episode, she will replace a character name with MBear's name (*lol*) or change an animal in the "scene" to something she is already holding - a stuffed animal, another toy, an article of clothing, or mommy's beloved digital camera.

3) A is for AWARE. Now this...is...huge. She is now our official town crier. She reports all things - from MBear's potty training mishaps (Mommy! MBear is poopoo upstairs! Upstairs! One day she simply carried her out of the playroom and plopped her in front of us - I suppose the smell got unbearable at that point), to SBear's adventurous streaks (Oh no! SBear is going up the stairs!). She has also been great at reminding us to do things - the other day the Huz forgot about the B-12 shot he was supposed to give her, so she took matters into her own hands (don't worry, this doesn't get ugly!) and took the syringe container out of the fridge drawer for the Huz to see! :)

4)...and D is for DISOBEDIENT. Oh boy. I don't know if it's the regression moments often associated with chelation (It is generally expected that while the child is taking the chelator, the "on" days, the child will experience some regression as the metals move through his/her body, altho some parents do report that their children actually do better on the "on" days than on the "off" days. Then the first "off" day, the remaining free-floating metals will re-bind into the body, so that day can also be problematic for the child, and for some children the first "off" day is actually the worst day. If the child is not improved after the first "off" day, after the first 2-3 rounds, you would reassess the protocol to determine if perhaps you should choose a different protocol. If your protocol includes ALA, also consider that your child may have developed a yeast issue. *taken from this*), or simply that she is now actively aware of how to test the waters of our sanity - but either way, NBear can be a pill! (I say yes! I say yes, Mommy! or No! No veg-a-bols! I don't want the veg-a-bols!) *ugh* The "good" thing is, I'm not even considering her autism as a factor in that statement.

Okay.
Kid-on-arm-fatigue is at its peak.
Later!

mainstreaming and other updates!

Check out this super-cute message from NBear's mainstreaming teacher:

(sent via email)

MommyBear, She did fantastic on Friday also. She and I have a system where every time she lies down or rolls on the carpet, I count to 3. She gets up immediately after I count 1. Also transitioning, she does well with numbers. She had a spelling test on Friday and was able to follow. Of course, thanks to NBear spelling it out everyone benefitted. :)

Mrs. MT

Spelling her words OUT LOUD?
Whowudda thought?........*wink*

*deep breath* Now that I'm here in update land, I've decided to enumerate the ongoings of the last few days for ease of mind (on my part), and ease of reading (on yours):

1) the whole suppository (DMSA - chelation) deal went surprisingly well last night! She kept still enough that administering it was a success. I followed the directions and had her lay on her side, with her knees to her chest. Huz kept her occupied by reading her favorite Dora book with her. Now (as is always the case, it seems) we wait for the results after we send the test out on Monday. *happy thoughts and prayers needed here*

* I have to add that it was SO MUCH easier to do this challenge test because we only needed to take her first morning urine sample (since she slept through the night). That sure as heck beats having to follow her around for 6-8 hours, like a desert nomad collecting water.*

2) Next item on the agenda - the antivirals. Important note on Virastop, Acyclovir, and OLE: hang in there, guys! Trust me when I say that I actually had thoughts of giving up because NBear had become so different in the past 3 weeks- irritable, defiant (very!), apathetic, hyper - and I was so mad at the possibility that these meds were making her worse, and would KEEP her like this. She was also back on Diflucan at this point. The last three days have been the light at the end of the tunnel, though. So, you can make your appearance now, Mr. Sigh of Relief. :)

*She did have a mild rash on her back and upper thighs, which most people (including the Huz)would probably say is viral die-off. It looked a lot like eczema to me, but who knows? After a few scratching sessions, NBear seemed fine.*

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!