Thursday, August 30, 2012

one Last Hurrah and the Long Haul

Josh and Abby started school last week...

I made note that last year in these pictures Abby had a black eye.  This year Josh is on crutches...and Ben has a black eye :)

Their teachers seem super nice and they're excited to get the year under way.

Ben started on Monday...

Signing "Bus"

There's been some stress with that...having my little three year old "baby" with serious health issues being away from me for three hours a day...but he loves it and I think it's really good for him (and me).  I just need to learn to keep my cell phone on me at all times in case of a seizure and try and stay close to home.  We did work out a plan though if I'm not available.  Hopefully we will rarely have to implement it.

Matt didn't start kindergarten until today...

Handsome Kindergartener!  He picked out his clothes himself :)

Cool Dude!

What a character!

I made him be serious for one more picture :)

... so we had three days of just the two of us in the morning.
We took one of those mornings and did what ever he wanted.
Since the Fun Park and Bowling weren't open until almost the time Ben comes home we ended up buying new backpacks, playing tennis and then getting some ice cream.

It was fun watching him try and get the tennis balls in his pockets.
We had about an hour to play but he was running around chasing balls so much that after 30 minutes he decided it was time to go get the ice cream.

This guy is our athlete.  He was watching the sports channel on the t.v. above us as we ate and commented often on what was happening.  He even got down and demonstrated some of the moves he was seeing :)

It was great to have some one on one time with this boy.  We had a grand Last Hurrah morning!

So....I guess we're in for the Long Haul with the diet.
It started working!?...?! :( !? :) ...!
I can't decide how to feel about this.
Last week I started noticing long periods of little or no myoclonics.  I mentioned it to Andy and we both started keeping a close eye on it.  Within a few days there was no denying it.  I had to admit that it was working.  I was so relieved after the conference, thinking that we only had a month left and then the week after we got home things started changing.

 Part of me is really thrilled.  I can't tell you how nice it is to see my little guy running around (chasing his great grandma in circles around the kitchen and giggling to be exact) and not falling down and hitting his nice it is to give him a bath and not once have him face plant into the water or fall sideways and get a big bump on his head from hitting the bathtub.  It's been a long year and a half of constant myoclonics.

The other part of me looks down a long road of possibly two years or more of this time intensive, strict, family affecting and emotional diet and wonders if I can handle it.  If I can, it will be well worth it if we continue to see the benefits we have the last week.  It has gotten a bit easier now that we're in a rhythm but not so much easier that I can look it in the face and smile.  Maybe some day :)

Really, I am happy though.  Finally!  Finally something is working!  After going through seven different meds and various other therapies and experiments over the course of almost three years with absolutely no benefit, it is amazing to actually have something change the seizures in a positive way.

He's still having them...especially in the mornings it's just like old times but throughout the rest of the day they are greatly diminished.  He still even has hard ones...Sunday night he face planted and got a bloody nose...but they are definitely fewer.

We haven't seen one of his "staring"/partial complex/focal seizures since we initiated the diet either.  Those weren't our real concern though but it's nice to knock another kind out as well.  He's still having big tonic clonics...we found him in his crib the other morning having one...but we're keeping an eye on those also to see if they are fewer as well.

That's my update for now...I've got to go weigh some hot dogs, ketchup and cream :)


  1. What precious children!! Praying fruitful and happy school days for all!! I'm glad you will get some time for yourself - that will be a treasure to restore your soul!!! I am so very thankful that you are seeing improvement for Ben!! YEAH!! I'll just keep praying complete healing for him!!


  2. What great news! I'm so glad the diet is working, what a blessing to see progress!!!

  3. I understand the mixed feelings about the success of the diet, but what a relief to have something finally make a difference!
    Cute "first day of school" photos of everyone--and it looks like you and Matt had a "grand day out"!

  4. So exciting! I'm glad you are seeing some results!! At least that gives you a little more incentive to keep going!!