Friday, November 13, 2009

The Good News

I guess I wouldn't blame you if you've forgotten about us. There have been very few reminders on my part to keep you up to speed. But, I guess if you're reading, we haven't been completely forgotten, huh? :)

You know how it goes, after such a long lapse it's hard to recap the entire series of events, but I'll do my best.

The past few weeks have had me either completely away from the computer or just plain too tired to sit and focus on it. It's been my last priority I guess I could say.

My old blogging used to serve as my own personal (and free of charge) therapy, but I'm just not thriving on it like before. I'd like to keep friends and family in the loop, but it's doubtful that I'll be releasing much of that old emotion for a while. Just not feelin' it anymore. I have been popping in occasionally to my favorite blogs but haven't quite had the concentration or energy to compose a comment.

So...for the updates.

We've started a new med, Lamictal. Slow intro on this one. Going up by 5mg twice a day each week. I believe we're at Week 4 and have two more to go until we reach the recommended treatable dose of 30mg twice daily.

We had a visit with the epilepsy specialist on 10/30. Besides my being dog tired and sick that day and him telling us that Austin will most likely die without immunizations, it was routine. Could have had this appointment over the phone. No labs, no eeg, no new meds to discuss (since we'd already started Lamictal two weeks prior)...just a "keep with the plan" and "see ya in three months". Oh, and the "you need to get Austin's immunizations up to date or he'll die". That I wasn't really fond of. I'm not a moron. I think I know the vaccs are important. But, the rock and the hard place saying pops into mind. Enough said.

I actually made an appointment with the pedi for a "revised catch up vaccs schedule", but I ended up being a no-show and rescheduled. He wants to give him the MMR and Varicella to start. I've got until the 20th to either get them or back out again. We'll see. No easy decision.

On the seizure front...not much to report there. Same ol' I guess. Although we are seeing some variations of his typical presentations. Instead of a quick head drop sometimes, he freezes with his head down and eyes locked in place...sometimes arms frozen in extension. This is new. About three weeks new. He doesn't have many of those in comparison to the more common drops and clusters though. Oh, and I've been seeing some head/arm jerks to the right. Also new.

Development has it's ups and downs. Progress here, regression there. Changes from week to week really. Eating suffered for a while, now it's number one in terms of progress. Now, play interest is low. Oral up one week...down this week. Never know with this kiddo.

I guess the most noteworthy piece to mention has been my continued focus on Christian Healings & Miracles. That's where my attention has been lately. Reading, studying, practicing, and last weekend attending a seminar in DFW area (about a 5-6 hr drive from here). I have books, cds, dvds, cards, prayer cloths, you name it. I've got it. And I've poured every ounce of myself into these. And have been just trying to spend some time with Austin minus the distraction of what's going on in cyberspace. Trying to keep the positives rolling.

It's probably the main reason for my hiatus. But certainly not the only. In the past three weeks, we've had birthdays (2), well checks, an epi visit in Houston, a touch of sickness, a highly anticipated trip to Dallas...and a death of a beloved family member, Chad's grandfather, Cowboy. So, to say we've had our hands full is an understatement.

I so wanted him to hang around until I got equipped with the knowledge and understanding of this healing thing. I'm still learning. After countless hours of prayer & reading & listening, and a six hour seminar, it's still a work in progress. It's actually a very simple concept, however, it can get tricky and complex to anyone raised under different teachings. It's certainly not alternative...I don't want anyone to get the wrong idea here. It's just not what I was taught in church. It's not twisted interpretations or radical thinking. It's just taking the Gospels and bringing them to It's been quite the task of unlearning a lot of previous beliefs. One being that a miraculous healing is like winning the lottery. That some people will just get lucky. That's so not supposed to be the case. It should be flowing just as frequently and should be just as accepted as someone getting saved.

And I'm not going to force this on all my readers (if I have any left lol). I'm just simply bringing it out in the open where anyone who may be interested can learn what I have. Any many will not want to. And that's cool. Religious views cannot be forced. Some of you will not accept this until you either a) see it or b) seek it.

This blog was created (in the beginning -before the true reality hit and my emotions took over) to serve as a central place for everything Austin. Austin's progress with IS, development, etc. I'm reverting (from my soap box) and holding to that from now on. I just wanted to give you an idea on where I am in the scheme of things and let you know that I am happy to share if you want to learn more. Freely I have received, freely I will give. Just drop me an email ( ). I'm tellin' ya, it's totally worth a look.

Heb 11:1


JSmith5780 said...

Hey Holli- glad to see an update. Been thinking about you guys. I hope the new med will give Austin some relief.

I'll keep checking in, whether you write frequently or not :)

Sophie's Story by Elaine said...

I could never forget about you. It's a blog...your personal journey. And at times, it is easier to write than others. So whether you are a frequent poster or are always in my thoughts.

baby trevor's mommy said...

Silly girl...thinking you would not have any readers left!

You have several of us who deeply care about you...and your amazingly courageous little man!

Thanks for trudging through...and getting an update out there. And as an aside note...I'm in a blog funk right now myself. Just don't really feel it. Oh'll pass.



Colby said...

Hey, there! Glad to see that things are "status quo"...I have not really been in the blogging mode much myself lately, either....

I admire you for continuing to search for new avenues for Austin...It is so very hard to know what to do for our kids when they suffer so much...Especially when nothing seems to be working very well...

You hang in there, and keep us informed.....


JSmith5780 said...

Hope you are all well!

Ellen said...

Hi, Holli. It is good to meet you and the superadorable Austin, I found you through another blog. I'm mom to Max, who's 7 and has mild cerebral palsy/seizure issues due to a stroke at birth. It's been a long haul, but Max is doing pretty well for himself. I have to say, nothing you don't know, that doctor who told you Austin would "die" without vacs is pretty extreme!!! I've tried so hard to keep doctors in our lives who are sane and optimistic, which keeps me sane. Anyway, nice to meet you.

JSmith5780 said...

Hope you all had a great Christmas. Hoping for a healthy New Year for little Austin!

Colby said...

Been checking in and looking for an update....Let us hear from y'all soon....Missing your news & pics! Hope the holidays went well and all is OK....