Thursday, January 29, 2009

So much to little time!

I probably have maybe 15-20 minutes before little one wakes from his nap and wants his lunch...I have tons to talk about, but I'll probably be splitting it between posts...

First, I've got to fill you all in on why I've been so out of touch...Chad's been working like crazy and it's been just Austin and Mommy for the past couple weeks. Every free moment I've had lately has been trying to keep my DVR from deleting my favorites shows! There's not much time for TV watching anymore, so that thing is filling up like crazy...gotta watch 'em! Naps are no longer for chores...that's all Mommy's got nowadays! And, honestly, I haven't really known what to post lately. We've been on such a roller coaster...I'm afraid that by the time I've posted great news, that it will be old news. Good days come, but everyday is different. Those great days are usually followed by the dreaded days. But, I figured that every one of you who check in with us are reading for a reason. You want to know how Austin is doing. That isn't to imply that I don't have anything good to share...I've got tons! As the saying goes...I'm just trying not to count my chickens before they hatch! I was putting off sharing because I was afraid it would change.

Soooooo....where do I start???

Ah, my little cry baby! I say that with much affection! No, really, I do. Have you ever heard a parent say that they're thrilled to have their little one pitching fits?!! Well, I couldn't be happier to tell you that Austin is FINALLY getting some say around here! I think it's quite a 180. He's never been so opinionated before. It's always been the one tone whine...unless he was hurting..On a few occasions he would have an outburst, but for the most part, he'd just go with the flow. And if he was unhappy...just whines. No real cries. Boy, that has changed! Whether it's him ready to get in his bed, or me taking away his paci for meds, or even the sight of the dreaded bib, he's telling me what he wants...and doesn't want! It's such a breakthrough for him. He's never expressed himself like this. He even kicks and screams when I take him out of the bathtub! It's just further confirmation that his personality and cognitive development are coming around a bit.

He's also quite the giggler these days too. I haven't seen him laugh so much since pre-ACTH. It melts my heart to see him laugh again over silly faces and noises. We saw this Elmo Live doll in Walmart the other day...Elmo talked and waved his hands and gave kisses...I must have played that for him over 6 times. Austin got the biggest kick out of that! How nice it was to see such a reaction again! I came pretty darn close to paying the 60 bucks for that silly doll! ;)

The seizures continue...unfortunately. Some days are better than others. Ironically, they've been better the past couple of days than they've been in a couple weeks. I say ironically because he's just come down with a cold. You'd think they'd be higher than usual...Strange.

We're still working on Detroit. I just found out today that I will need our local doctor's cooperation. Great. I was really planning on ducking out on that one. I thought I'd almost made it without them. EEERRR!! I really didn't want to involve them...BUt, they're the ones with all the clinical info and I need a script for a critical test. Darn insurance needs them too. Like I told Mom earlier...this will be a HUGE step for me. Awkward confrontations are not my thing. And I KNOW this is going to be awkward. I can just see it now...when I call them...Um, yeah, Austin has a cold...what can I give him that won't interfere with his seizure meds?...oh, and by the way, I went behind your back to get a second opinion because I think you all are heartless, insensitive, and incompetent...can I get a script for a PET scan? Thanks...
Getting through this is going to be a turning point for me. I've been avoiding it like the plague...We'll see how this one plays out. It's got to be done for Austin and I'm going to do it if that's what it takes. I'm just dreading say the least.

I'll definitely try to post more often. I've been missing it!
I still have lots to share, so check back later!

1 comment:

JSmith5780 said...

I am SO glad to hear that Austin is getting his personality back, even if it means lots of kicking and screaming!

I totally get you on the whole confrontation thing. We just went behind our neuros back to go to Boston Children's. I am SO happy I did. But really you (and me!) should have NO REASON to feel guilty. We'd be lax as parents if we didn't want the best and GET the best for our kids. That said, I didn't call my lcoal neuro to tell him we are dumping him, I just left a message on his admin's VM! :)

I hear you on the OT. Jeff works about 15 hours a week of OT and he has for the past year or so. It gets old quick!