Sunday, March 14, 2010

Wanna see somethin'?

Three months ago I wrote to a handful of close friends. It was Dec. 11th, 4 days after Luke started the Ketogenic Diet.  This is what my email said...

"I promised God that I would truly rejoice in every victory and CELEBRATE without fear that tomorrow I might be mourning again. Do you ever feel that way? Thinking to yourself... "Do I get happy about this?....or will that only make the disappointment that much harder if things go downhill again?" Well, I decided that is no way to live. And being "cautiously optimistic" is perhaps not being optimistic at all. Mmmmh?? Enough of my random thoughts. The point of this is share with you, my prayer-warrrior friends, that today Luke was seizure free. Nothing. Not one. So, in all honesty, there must be some fear still in me cause I'm not brave enough to put this on my status, or on my blog...or even call my family. Somehow putting everyone through a potential roller coaster ride just doesn't seem right. But I didn't think you'd mind. :-) Cause you're strong like that. ;) And I DO want to celebrate!! Thank you for praying and for sharing this moment with me."

Sure enough, Luke seized the very next day and it has been well....yeah, a roller coaster ride in some ways. Of course, we're used to this kind of remember, right? The whole 130 days in the NICU. That was a crazy ride. 

Anyway, friends what I want to show you is this.........


That's right....this.   

THIS, you guys....THIS is not just any calendar.  This is the calendar I use to record Luke's seizure activity.  

Did you see it???   Scroll back up there if you need to.   You're gonna want a good look.

:-))))))))    That's right. There's nothing on it!!!!!!!!!!!

October, November, December, January, February......those are all marked up.  But not March. 

I was wiping off the counter today and that calendar caught my eye, and I was.....well, my smile was              W--I--D--E.  

Specifically, Luke has been seizure free for 14 days now.  2 weeks.  You gotta be seizure free for 2 YEARS before you're really "seizure-free".  (reminds me of when we had to wait 5 years before my dad was declared really, truly "cancer free". What's it been now, Dad?  15 years?).    So, we have a little while to go yet.  And, we still have to get a picture of Luke's brain. We'll go back to St. Louis Children's in another month for an EEG. And the EEG will really let us know what's going on up there.   But as far as we can seizure activity.

Every good gift is from God. And these past two weeks have sure been a gift!
And if there's anything Luke has taught us, it's to just stop, and appreciate each day for what it is, without worry or fear of what tomorrow will bring.

Will we be celebrating when Luke has been seizure free for 2 years?  Oh yes!!!!!

But whether it's 2 years or 2 weeks......both are reasons to be thankful.  God is so good!

I think Luke's pretty happy about it.  Here he is on Day 14 of seizure freedom.

One of these days I'll have to show you all the things he's beginning to learn now that the seizure monster is moving out.  They're small things to most of you.  Not to us.  To us, they're huge.   When seizures are wreaking havoc, erasing learned skills and keeping you from learning any new ones, you appreciate every. little. thing.    Ah well.....Since you're already here, I might as well show you one thing he loves to do now.....

Where's Luke?


            Wheeere's Luuuuke?




    ~another prayer warrior for *all* your family, marc and jill

  2. I'm smiling W-I-D-E!!! So glad your email from three months ago made it to the blog. Now sooooo many more people can celebrate DAY 14! Thank you JESUS! And ohhhhh girl... can you imagine the celebration when Luke hits 2 years seizure free?!?! It'll be here... and soon.

    Still praying and believing!

  3. Thanks for sharing that letter, it just so happens that we are going through that emotional roller coaster now. The funny thing is your thoughts are so much like ours in not wanting to celebrate victories today because of the possibilities of defeat tomorrow, even the part of not wanting to share those victories with friends. I just wanted to say thanks because you've encouraged me to break past that and continue forward.

  4. Every day SF is a miracle. I hope this streak continues! Enjoy every minute.

  5. tears of joy with you babe! thank you jesus. let this two weeks of freedom from seizures turn to a lifetime.

  6. Yea!!!! Praise the Lord!!!!! Smiling BIG here for Luke and all of you!

  7. Big smiles and tears of joy for the strides he's making! God is so good!!! Praying for continued seizure free days!!



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