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.*

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!