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What goes up…

Posted by on 2:03 am in Blog | 0 comments

What goes up…

I don’t have to tell you the rest. I think you get the picture.  As I write this, my head is threatening to explode. Well if not my head, then definitely my tear ducts. You see, Pepper is lying on the floor right now in a deep un-wakeable sleep. She just had another seizure. Last night, little miss was up all night, fussing and crying and trying to get out of bed. This was after two days of intermittent seizure clusters. When Pepper is awake, Daddy and I are also awake. Neither one of us has slept much the past week, so emotions are running...

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Food, Glorious Food!!!

Posted by on 2:01 am in Blog | 0 comments

Food, Glorious Food!!!

Oh food! Wonderful food! Marvelous food! Glorious fooooooood!! (Thank you St. Basil’s Catholic Elementary School circa nineteen eighty-something for putting that song in my head forever) Now that I have your attention! Hi! Remember us? We haven’t left you. We’re still here. It’s been a while though, and for that I must apologize. Sorry to have left you hanging for six months. That wasn’t very nice of us.  But things have gotten a bit busy in our household. How have you been? I see you grew your hair out. It looks nice. I’ve missed you. I had...

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Marching On

Posted by on 1:59 am in Blog | 0 comments

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,...

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Celebrate!

Posted by on 1:58 am in Blog | 0 comments

Celebrate!

In case you were hoping for ground-breaking news, I should start by clearing the air. These little sweethearts are all celebrating Pepper’s birthday. Though we would like to report being seizure free, this celebration was for another milestone. Pepper turned two on Thanksgiving weekend. In this photo, she is surrounded by her loved ones. I can tell you truthfully, that she really loves these characters.  She loves them so much, she fell asleep halfway through her party and stayed that way for 4.5 hours. She missed her cake, missed...

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Back of the Bus

Posted by on 1:57 am in Blog | 0 comments

Back of the Bus

It’s a bumpy ride at the back of the bus and no one knows that better than we do. We have been riding the back of the bus for while now. You must remember what it felt like to be at the back of the bus? No supervision, all noise and chaos. You can’t see the twists and turns and bumps and valleys ahead of you. It’s all surprises at the back of the bus and if you are not careful, you end up wearing your lunch.  Many people associate the back of the bus with segregation, isolation and rejection. The back of the bus is all those things as well....

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A little bit of Country…

Posted by on 1:55 am in Blog | 0 comments

A little bit of Country…

It has been exactly a month since we last posted, and as much as things have changed, so many things have remained the same.  Please let me get out my twangy guitar to regale you with my sorrowful song…  This month has been a bit of a jumble for us. I lost my job back in June, and though it was devastating and worrisome for me, I now have the mindset that it has given me the gift of time. I have finally been able to work on that house I was complaining about in the last blog. I have also been able to spend some time with my family,...

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It came from you

Posted by on 1:54 am in Blog | 0 comments

It came from you

Her perfectly formed lips, beautiful almond shaped eyes, heart-melting smile, sweet button nose, infectious laugh, and her incredible charisma, it all came from you. But what you heard on that day when they called our house was that her genetic mutation came (was inherited) from you.  What we learned with that one phone call is that Pepper’s genetic mutation was inherited from daddy. What it means for her epilepsy, is that this genetic mutation is not likely causative of her seizures. Why? Because daddy has never had seizures, and does not...

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Mama

Posted by on 1:52 am in Blog | 0 comments

Mama

“Mmmmm Mamma” We’ve been hearing a lot of this word lately in our house. We’re not sure if Pepper is directing the word “Mama” to me, or if she is just repeating it because she is trying to make sounds. Either way, I will take it! It makes my heart melt, each and every time.  Being “Mama” is the toughest job I have ever had. It’s a no-vacation, 24 hour, round the clock exercise in listening, observing, anticipating, learning, responding, worrying, acting, loving and sometimes heart-breaking. And that’s just a good day.  All of this, and I...

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Nursing Weak

Posted by on 1:50 am in Blog | 0 comments

Nursing Weak

There has been a lot of talk this week about celebrating nurses for “Nurses Week”, and there are so many reasons to do so. Nurses are our front line health care workers. They do everything! And by everything, I truly mean everything. They wipe our tears, our blood, and our bottoms; they fill our veins, our bellies, and our spirit; they push us to do our best, they push us in stretchers and wheelchairs; they hold the curtain closed, hold our clothes, and hold our hands; they help us understand what is happening to us, and our loved ones, they...

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Purple For Pepper

Posted by on 1:49 am in Blog | 0 comments

Purple For Pepper

264 days since her first seizure… ~345 seizures in total… immeasurable gratitude for the constant love and support from our family and friends.  On Tuesday March 26, 2013 our family wore purple for Pepper. Many of you showed your support by wearing purple too.  We just wanted to thank you for providing us with the support that strengthens us each day. 

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