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4.24.2016

UPDATE ON COLE.

A lot of you have been asking for an update on Cole's Seizures + Behavior + School for next year.

Medication + Behavior Update. 
We have good news + bad news...as always! I'm SUPERSTITIOUS to say this, but his new medication is improving his seizures.  Of course every time I THINK something is helping he will have a seizure the next day. So, I'll just leave it at...he's had his last seizure on March 9....now we sit AND wait! HOWEVER, now that he is OFF of Keppra...his Mood + Behavior has not improved like we had hoped for.  We ALWAYS thought he was having "Keppra Rage", now that it is out of his system his mood is DIFFERENT. Not better & not worse.  That was disappointing to find out.  But, like everything else...we will move on & continue to fight for Cole.

New School Update.
We, along with his teacher + ALL of his therapist + Principle have decided it would be best to move him to an "All Inclusive School for the Disabled".  I KNEW this was coming for YEARS.  I just didn't know WHEN.  I've been prepping myself emotionally for this.  But no matter how much I "PREP"...the SADNESS + REALITY are still there. I'm happy that he will go to a school that can meet his needs, but sad that THIS IS REALITY.  I still mourn that loss of my "Once happy + healthy 10 month old" to this AWEFUL Rare Condition.   Those same dreams I had for him when he was born are buried deep into my soul...and my dreams for him are much more SIMPLE + SMALL (to most people) but to me, they are BIG DREAMS...like being able to FEED HIS SELF or not wearing DIAPERS anymore.  It's funny how life changes, how your dreams + passion change because of a LIFE EVENT.

I used to think that I was the one who sacrificed my life for Cole so he could come here, experience life & have someone to take care of him. But the more I think about it...he was what I NEEDED. I needed him, so I could be the person I am today.  ...so MAYBE, JUST MAYBE...he said "I will sacrifice a "typical" life  for my mom, so that she can be the person you need her to be."