Unconclusive

Yep, your guessed it. That option that left us hanging with no knew knowledge? That's what we got. Basically the geneticist said we don't know enough for now, but we've got plans for another MRI at 2 years old, and hope to learn more then.
I mentioned before that this would be the hardest route for me. But I also realize that without a 'label', he also doesn't have a limit. So we're fine with the news (or lack thereof). The doctor gave us the option of doing more random tests to see if we come up with anything, but didn't seem too hopeful that we would. He said the MRI at 2 years old would be our best bet because at 2 more of the brain is developed and you can see any irregularities better.
The only reason we might want to take the chances (and expense) with those random tests is if one of them showed us that he might have a tendency toward a certain ailment and there is something we can do now to help alleviate that.
But for now, he's happy, healthy and learning every day. That's our Easton Experience, and we love it!

Mixed Emotions

Kind of mixed emotions right now. You know that feeling if when you really want to finally know something--like whether you passed an exam, got accepted to a job or made the big part in the next play, but you're nervous about what the answer might be? That's kind of where we are right now.
In two days we'll meet with the geneticist, who started running tests and studying Easton's 'condition' over 4 months ago, to see what he discovered and what his diagnosis is.
On the one hand, it will be such a relief to finally at least know and stop wondering. We've become pretty patient through this Easton Experience, but even then, four months is a long time.
So, what are the possibilities? What could he tell us? There are a few possibilities. One being that there is no diagnosis because he doesn't have a 'syndrome'. This would of course be our highet wish, he has been developing well lately and it could be that he's just a little behind but will catch up as he grows.
Another possibility is an obscure syndrome that basically means he'll be a little behind in life and possibly have seizures and some health problems. This is kind if where we're at right now. And even with the possibility of seizures coming back, and some kidney problems and some delayed development, he is still a very happy child. He's always clapping with a big smile on his face. Often he wakes up, claps a few times, then goes back to sleep. I can handle a few health issues and delayed development if at least he's happy. His smile can melt the hardest heart and lights up the room like an atomic bomb.
Another possibility may be harder news, though given the circumstances, isn't too likely. Many syndromes don't have a long life expectancy. I mention this option, not because we think it will come to this, but just to help others know of the thoughts a family goes through when waiting this kind of news.
Probably the worst possibility would be no news. Inconclusive. Often times its better to at least know something, even if it's bad, than know nothing. Although in some ways, by not labeling him, you also aren't limiting him. Not even the sky is the limit if you don't have limits. So this possibility may very well be a blessing in itself.
Either way, and no matter the news, we are so grateful to have Easton in our family. Each of our kids is special, and brings something wonderful into our family. One part of me dies inside every time I think of Easton not being able to experience life like other children, but another part stands in awe at the majesty and power enveloped in that tiny spirit and I applaud along with him over the smallest, yet monumental feats.
And if, by some small chance the results are less than favorable in two days, I will have peace. For I know that through Christ I can do all things.

Pathetic to some, beautiful to me

It's probably pretty pathetic to watch a couple parents get misty-eyed and cheer for their 1 year old as he does something so simple as grab a toy. But to see the monumental struggle in his eyes and watch him skew his mouth in concentration as he actually shows interest in the toy, then balances out his depth perception and fights his disobedient motor skills to zero in on it--it fills my heart to breaking. With love, joy, and if I'm honest with myself, some anguish for this special child of God who has been given some challenges in life but struggles onward with smiles and laughs. We are so blessed.

So many people understand exactly how I feel. With ill children, disabled children, injured, deformed and "slow" children throughout the world. Each is a blessing to their families. No one signs up for it, but parents and siblings and neighbors the world over rejoice with each triumph over seemingly small, yet monumental battles. 

I can't help but feel that our Father in Heaven feels the same about each of us, as we battle with self-esteem, hate, envy, addiction or pride. I can just picture Him looking down on us with a tear in his eye and a huge smile on his face. 

That's the God I love and worship. A Father who rejoices with our triumphs and weeps at our sorrows. How truly blessed we are.

Easton is on a roll!

Yep, last week he started rolling from his tummy to his back.  This week he sat up for ten minutes on his own. He continues to make progress.  And then to top it all off, he had two kidney tests on Monday and drum roll please.........his kidney reflux has cleared up!  He does still seem to have a blockage because one kidney isn't draining as fast as it should, but he doesn't have to have surgery yet.  Not for the kidney at least, but he is going to have surgery on his manly parts in a few weeks.  Poor boy!
We again want to thank everyone for their thoughts and prayers.  We continue to see blessings everyday.

Alert! Major Rollover in the Family Room!

Yes, you read that right, Easton rolled over for his First Time yesterday!! Went from his back to his belly. He did it twice, once unsupervised--we just noticed he was suddenly on his belly, and once while mom watched.

Oh, the things people miss out on when they cram their kid's development into the 'normal' time frame. Most parents see sitting-up, rolling over, head-holding up and other things in such a short time. Lucky for us, Easton is stretching each level of development out, so we can enjoy it all the more. Bet you wish your kid was that considerate :)

Good Waves = Good News

We got the results back from Easton's EEG last week. The purpose was to check his brain waves to see if he still had the Hypsarrhythmia or any other abnormal, seizure causing, naughty waves. Results? (drum roll please) Easton has great looking waves!!! (which is more than I can say about those beauty queens in the parade--who taught them how to wave anyway?) 

They're starting to wean him off his anti-seizure meds now, and if we don't notice any seizures, they'll do another EEG in 6 months to check his wave status. 

Development update: Just today, Easton started semi-attempting to clap his hands. It's pretty awkward, and he doesn't open his hands to do it, but he smiles. It melts our hearts.

Have you checked out Apple's new iDoc?

Er, um, actually, that's supposed to by an Eye Doctor, not an iDoc. Slight misunderstanding, sorry.

But, anyway, in an effort to keep up on our goal to visit every specialist possible, we've got an appointment with an Eye Specialist for Easton. The Early Intervention lady has some concerns about how he'll track objects (with his eyes) to the left, but not the right. Plus he often won't look at me (dad), in fact he'll go out of his way to look the other way--even if I move to get back into his view (it's a little game we play :). The people say it's because he gets overstimulated by my ugliness, and can only handle the sight of me for short periods of time . . . or something like that.

Anyway, EEG this week, then he'll try out the iDoc next week. He's making lots of new friends. (do everyone's kids have this expensive of friends?)