Marching On

Can you believe that four months have passed since our last post? To all of our cherished friends and loved ones who have been checking for updates, I must apologize. The last few months have been madness in our house. Pure madness and a little bit of March madness too. Thank you for asking about us by telephone, text, email, mail, smoke signal, osmosis, and grapevine… However you got through to us, you did, and we hope you have all been well since we last spoke.  Since our last update, we celebrated Christmas, rang in the New Year, went on a couple of dates (yay us!), celebrated Valentine’s Day, Family Day, St. Patrick’s Day, March Break and Purple Day. It’s been a while. Sorry.

A bit on Purple Day before I go into the rest of the updates. This year we didn’t celebrate as big as we did last year. Last year we had balloons, and photos, and Facebook updates and spread as much awareness as we could. I am no longer on Facebook. I quit cold-turkey in September and haven’t looked back, so getting the word out there was a challenge. Next year, I intend to make it our biggest Purple Day yet. Mark your calendars folks. MARCH 26th, 2015 we shall paint the WORLD purple in celebration of Epilepsy Awareness and our sweet Pepper. She deserves the fanfare, trust me on this one.

Okay, so here’s the cheese. We’ve moved! Not very far, but we have moved. Over the Christmas holidays (if the holidays aren’t stressful enough), we forced ourselves to pack up our stuff, and move into the house we have been renovating over the last two years.  So… wanna come over? Just kidding. We’re still renovating. And unpacking. And dusting. And trying to find space in this very small place for our worldly possessions. <insert ad for junk removal service here>  We also apologize for not sending out any Christmas cards this year. We do this every year, and we look forward to picking a theme and having our family picture taken to commemorate another happy (and likely scary) year.  This year, it just wasn’t possible. So, from the warmest places in our hearts, we apologize and send a big cyber hug.  Sorry! We still love you. 

In mommy news, I also got a job! This happened right around the holidays, so that made the situation with the move and the cards and the kids and the presents under the tree (which was not decorated) a little, well, interesting.  In any event, Santa pulled through for me, and got me a job and I am ever grateful.  I am happily back to my regular commute by train into the big bad city run by a mayor in drunken stupor who may have smoked crack. Who are the voting citizens of that city anyhow? Seriously, who?

Most importantly, you asked about Pepper!  It would be terribly remiss of me to not update you on how our beautiful little angel is doing, so here goes. We’re nearing ~900 seizures into epilepsy at last count.  This includes the random clusters of 6 to 12 seizures she has every 3 to 4 weeks as well as the the daily absence seizures she now experiences.  She goes through rest periods however, which make us hopeful that she is possibly “growing out” of them? (Can she please, grow out of them? Please?) Because I can tell you that the three medications she is taking, are not preventing her seizures. Quite frankly, we doubt that they do anything to help her.  On the contrary, I am starting to believe that the medications are working together with the “breakthrough” seizures to delay her developmental progress.  We are still on the “wait-list” for the Ketogenic Diet. No, we haven’t started it yet, and no, it’s not as simple as buying a book and sticking to the recipes. It’s a medically supervised diet which requires hospitalization, regular lab tests,  and lots and lots of ongoing dietary management.  We are still waiting. And waiting. And waiting. And waiting.  I cannot begin to express the frustration and impatience we feel with the lack of knowledge about her condition. I am only grateful that this internal battle  I have regarding my feelings towards the medication and the very slow ongoing medical investigation are not affecting the hope and the love I feel for her. Nothing is worse than giving up on a child who needs your hope and will. (I will have to remember this when they become teenagers and I am ready to have them walk the plank) Nothing will really change the love that I have for this little sweetheart. She’s a bundle of happiness and thanks to the efforts of her daycare teachers and her loving grandmother, she has also taken to expressing that her love back to us. Pepper has started blowing kisses to us. She hasn’t started crawling, or walking, holding objects in her hands, or saying words, but she wanted to let us all know beyond any doubt that she loves us. My heart couldn’t possibly be more full of love and I wouldn’t want it any other way. For now, we keep marching on.