Celebrating Miracles With Bated Breath

We are 10 days shy of 6 months seizure free!  This is the longest period that Jimmie has ever experienced a reprieve from the seizures that have changed the course of all our lives.  They started when he was 4 1/2 months old.  We've beat that.  At that time we started him on topamax and b6.  He went seizure free for a week.  Beat that.  We tried ACTH, keppra, depakote...nothing worked.  Then we tried zonegran.  Well we started with the generic.  With no success.  In December 2008, his epileptologist switched his prescription to "as written."  At first his seizures increased.  But to be fair, he did have a cold and an upper respiratory infection at the same time.  Then on January 6, 2009 he stopped seizing.  One week before the birth of his baby brother.  That reprieve lasted 4 months.  Beat that.  So here I sit, with bated breath, loving Banzel, Zonegran, and Keppra with all my being.  6 months is just a few short days away.  A little over 1 week.  Let's not miss any doses! Shall we? 

Oh, but it is the worst part of my day, administering those meds.  They taste awful.  And he fights it so hard.  I hate giving it only slightly less than he hates taking it.  Contrary to his belief, I do not enjoy holding him down and forcing foul tasting concoctions into his mouth and making him swallow.  In fact it breaks my heart daily.  But I do it.  Because it is what is best for him.  Because it is working.  And that makes it worth the heartbreak.

So right now, I feel like dancing.  I feel like yelling, "Yee Haw!" loud and long and to the sky! 

Not only do we have seizure freedom for our beautiful boy, but he has made leaps and bounds with development.  He has better eye contact.  He has a better sense of humor and laughs more appropriately.  He has even played appropriately (on rare occasion) with toys, once even sitting on the ride on firetruck and pushing it with his feet, just like you're supposed to.  He has sat on his daddy's lap and slapped his daddy on the chest happily cooing, "DaDaDaDaDaDa."  He hugs readily.  And low and behold, the boy has looked when his name is called and come when asked to come!