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8.29.2012

1ST DAY OF SCHOOL.

Cole's 1st day of preschool (but 2nd year of preschool) was yesterday.  and here's how it went.

Getting on the bus:
 Getting strapped in:
 ...and he's off to school.
 Mamarazi followed the bus to school:
 ...and that's how my Super Hero started his day!
 He came home pretty exhasted and in a very bad mood, so he went down for a nap!
...then we headed out to play with the cousins.
Going on a "Hay Ride":
 Cowboyin' it up with daddy & LOVING EVERY minute of it!  We need a horse...he used to do Hippotherapy through Early Intervention, but it's a bit pricey now that he has transitioned from Early Intervention to the School District. So if anyone has a horse he can ride, let us know!
...I'll have to do another post on all of the things he's been learning lately!

8.27.2012

MEDICATION CHANGE.

It's been about 2 weeks since we weaned Cole by 50mg from Keppra.  It doesn't sound like that much...but WOW, let me tell you...it messes him up ANYTIME we mess with his meds.  Cole used to sleep SO well at night and now....he wakes up at 3am and won't go back to sleep...unless I get *IN* his crib with him.  It's either A: I get him out of his crib and he's up all night punching his own head, punching my head, pulling out my hair, scratching me & pounding his head on the ground  *or*  B: Get in his crib with him, he goes back to sleep in 1-3 hours...and I climb out...then I'm left with a killer migraine the next day!  I'd rather go with B.  Last night though, he decided he didn't want to go back to bed AT ALL.  We left the door open while we were in and out of sleep for about 30min while Cole played...but that's obviously a No, No when you have a child like Cole, so out of bed we got and ALL of us were exhausted in the morning...but, we both had to go to work. So...NO the drop in Keppra hasn't changed his mood :(  I'm adding B6, B12, Folic Acid & Vitamin C to his supplements to see if that helps again. 

 This little guy doesn't like to cuddle, nor does he EVER sleep anywhere but his crib, so I jumped at the chance to snuggle with him...it made EVERYTHING so worth it!  After he woke up he just wanted to lay in my lap, and he kept kissing my hand...he totally melted my heart and I ate up every moment of it. 
He is such a sweet little boy with an AMAZING spirit!
...especially when he is nice or sleeping ;)

8.14.2012

CLEVELAND CLINIC POST #1

I'm going to do a few different posts from our trip since we had A LOT going on!  

Cole's Welcome Sign:

Getting admitted for his 24 hour EEG:

 Getting the EEG Leads glued on to his head:

EEG Leads on...nope...he was NOT this calm...
we had to pin him down & he's STRONG!

Cole tried to get away from everyone, he wanted to cuddle with his mama!
...and FREAKED out when anyone tried to touch him.

"Big Brother" watching us for 24 hours...
Video & Sound recorded at ALL TIMES!

This is Cole's EEG while he was sleeping  (it looks very different when he's awake). We have NEVER-EVER-EVER seen Cole's EEG look like this even while sleeping.  Usually it looks like CHAOS & EVERY wave touches.  Staring at this gives me hope.  I SERIOUSLY CAN'T believe how GOOD this looks!!!!!

Cole is a different little boy now, since his surgery.  He used to be fine lounging in bed...not anymore! Thank goodness for the ipad, since he doesn't watch T.V.!!! (he ONLY likes watching his "books")

Allyson is Cole's CPN, she always checks on him when he's in the hospital. But this time, Ally wasn't assigned to Cole...she and the  attending doctor were fighting over who got Cole...and Ally WON! ...we LOVE you Ally.

We LOVE his nurse, Cindy! 
...we didn't see Karmica this time :(

Daddy & Cole.

Using Daddy's hand to play "peek-a-boo"
so FREAKING CUTE!

He's out & running around.

Killing time for our interview with CBS.

...this was THE BEST GRILLED CHEESE I've EVER had! It was deep friend...need I say more. Thanks Allyson for telling us to go to Melt!

8.12.2012

NORMAL EEG WASN'T SO "NORMAL".

I'm just doing a short post...I will post all about our trip, the Epilepsy Surgery Conference & our interview with CBSnews another day because we just got home & we've been traveling for 12 hours!!!  

So on Friday, we were told Cole's EEG was "normal"...which means no seizures & no spiking (spikes are considered abnormal brain activity, which in turn...means the EEG is not normal and they are substitutable to having seizures).  On Saturday, Cole's neurologist caught up with us to tell us that they did indeed see 2 (short) spikes this time around.  When we went in February for his 6 month post op visit, Cole was not having seizures, but had high amplitude spiking....they saw that on a 1-hour EEG.  This was 2 short spikes on a 24-hour EEG.  His EEG is considerably BETTER, especially since 8 weeks ago he had seizures from the new medication...but it was pretty disappointing to hear "normal" EEG since this has been our goal for 3 years now.  For us, it's like winning a million dollars for 24-hours, only to find out that you really didn't.  We will continue to lower his Keppra from 500mg to 400mg...in hopes to help his rage, but hopefully that dose will be "high" enough to keep the Sz's at bay.  We will keep praying for his brain to heal, & hopefully at his next EEG, time will help & we will have an even better EEG. 

8.10.2012

1 YEAR POST OP.

It's been 3 years EXACTLY  when Cole had his 1st seizure & a lot has happened in those 3 years.  We never gave up & today we can feel the Saviors love for Cole & our family...his EEG looks "normal" for a child his age (this is the FIRST "normal" EEG) they didn't see any S's or spiking!!!! ...however, we will be weaning his keppra a LITTLE to help his rage, so we will continue to pray for good results.  Thank YOU for your prayers, love & support...we couldn't have done this with out you!  1 year down...5 more to go, we can do this!

8.08.2012

LEAVING FOR CLEVELAND.

We are leaving for Cleveland this morning...WOW, I can't believe it will be the 5th time in 1.5 years!!!  Hopefully, everything will go well, and Cole will only have to go 5 more times, for 5 more years...that's IF everything is good on the "home front".  ...why 5 more years you ask?  ...because they treat Epilepsy like cancer...they need to be "in remission" for 5 years...and so, all of our "vacations" will be to the Cleveland Clinic...of course, it is kinda like a vacation for us, because now that we've found the best drs for Cole, we can breath and enjoy life instead of playing "mystery diagnosis".  All though, I think I got pretty good at that!  Anyways, wish us luck & I will try to keep you updated...tomorrow Cole will have a 24 hr EEG....good thoughts & lots of prayers!  Friday, he will have a Neuro Phyc Test for 3-6 hours...again, good thoughts & lots of prayers, mainly for the person who will be doing the testing...cuz he's gunna get CRAZY Cole & a run for his money.  I hope he still likes his job after Cole is through with him!