Tag Archives: epilepsy warrior

One Month and Counting…

It’s been a long haul… We try and take it a day at a time, but every once in a while we hold our breath and put these milestones out there defying superstitions to shut us down. We will keep counting silently for as long as it takes. #epilepsywarrior #onemonth #seizurefree #okwithchange #wearpurple via Instagram http://ift.tt/1CVZQ0I

The Princess and her Pillow

This girl… She has no idea how spoiled she is. And you can’t blame her. 4 brain surgeries pretty much earn you anything you want in my book. You can’t see Daddy’s arm perfectly propping up this pillow to have the optimum drinking angle. Hopefully some day we will all get good chuckles from all the doting. #epilepsywarrior #purplepower #spoiledrotten #earnedit #purpleprincess #reese #okwithchange via Instagram http://ift.tt/1poGJbx

No Use Crying Over Spilt Milk

Yes, we had some milk spillage tonight, and no, that is not a yoga pose or a new form of child punishment. I mean come on folks, ain’t no thang in this house — especially on a night like this. I was so calm when I heard the telling “oops” from behind me. But honestly, how could I yell, or even get exasperated and scold when I was the distant one expecting my six year old to pour his own milk. And that’s when I realized on a seizure night everything is different.

We all assume different personas as we cope and grasp at anything that can ground us. My son becomes super helpful and responsible. (He is good anyway,) but he starts buzzing around trying to do anything that makes us all feel better. Continue reading No Use Crying Over Spilt Milk

My Army of Oils

Reese had a rough week after the adenoids surgery. Don’t think we realized how much stress it would be on her system. They sent us home with the post-op instructions (of which there is NONE, really), and said it’s normal to run a low-grade fever. Yeah, except it’s not OK for Reese.

So with my hours of sitting around with her last week, I started to think how I needed to explain all this to Davis if he asked. Sometimes it’s the easiest way to grasp something anyway, so here you go.

We all have army men inside us fighting to keep us healthy. Some of the meds Reese takes are making her weak. If she gets sick or in this case if her body is hurt, her little army men aren’t strong enough to help her feel better because of the medicines.

Continue reading My Army of Oils

Under Control: A Reese Update

Control is not something I feel I have much of these days. It takes so much for us to just maintain a normal routine, and that’s mostly out of our hands, too. It depends on who is sleeping well and who is hungry and if I don’t get away when Reese is sleeping, then how do we juggle things like groceries and making dinner, because she is my shadow. All. The. Time. It’s sweet. I love it so much. Having been away at the office five days a week for so much of her first two years, there was always that worry I wasn’t with her enough. (I think it’s safe to say she’s not holding any grudges.) So I think if you take all of her needs and you throw in our free-style rapping, ninja-loving, super-energetic wild man who never, ever takes a break. Ever. And yeah, it’s kind of just crazy all the time around here.

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And yet, when I start to feel our routine, (ok, so it’s more of a small town’s train schedule that is written on paper, but hardly ever kept, because of the sheep stuck on the tracks or the sleepy old driver. Routine might be a little too strong for us.) Still, when I feel it coming back into focus, I do almost have a sense that we are managing all this crazy.

Continue reading Under Control: A Reese Update

Our Little Exploradora

Snapped these when I found her in the corner of forgotten toys. Weeks ago I stacked up some odds and ends behind the couch and she managed to wedge herself in here between the pirate ship and the monster truck.

I figure this tough little girl is bound for a tomboy future, and entitled to just about anything else she wants, too. But it’s a bigger deal than just being a toddler… Continue reading Our Little Exploradora

Get Out Your Pencils!

It’s been a good week. Super hectic. Crazy, really. But, still great progress for Reese, so it’s a winner in my book. 

To be brief, Reese has shown some real mental strength and focus this week. It’s an amazing feeling to witness her little breakthroughs — lots of pointer finger work with the left hand, length of attention has expanded, deep personal connecting, and a little bitty step in advanced reasoning. 

On top of all that, we’ve grown! It’s hard to tell in pictures just how small she is I think. You probably forget, like most people, that she is nearly 2.5 years old. She looks like a small 12 month old.

  • She weighs 21 pounds now, (last summer she was a beefy 26), here’s hoping she plateaus and doesn’t lose any more.
  • We’ve moved up a shoe size, officially in toddler shoes now, and not infant soft-soled ones. 
  • And my favorite!!! After standing at 29 inches tiny for 15 months, she’s tacked on two, TWO, inches! Time to mark the walls. This girl is going to wear out our pencils.

This is presumably because we’re down to a very small dose of steroids allowing her body to start behaving normally and maybe realizing it needs to kick it into gear and start taking care of her. 

And I have to share, we had a super great wrap up to our therapies today. She communicated her need for water using our picture book we have made. She might as well have won a Gold Medal in my mind! Thrilling!! She also is grasping “cause and effect” more and more. She pushed buttons on a book with sound effects. This is an imperative skill to get to understanding things like “NO.”

But above all, she is just connecting and showing her sweet little self to everyone she is with. I know they feel it, too. Her expressions show this amazing appreciation and love in her eyes, and I know we all can’t wait to see what she has to say when she’s ready. 

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I believe in all the research that music helps with healing and learning and I have always believed in my heart she loves music as much as I do. Sometimes I twirl around the room holding her or boogie down and she giggles. But I had no idea she actually connected dancing with music before today. Who knows, but it sure seems like a new connection has been made because this is definitely something new!

Our New Life: Facing the World

I feel like there’s a caption here, representing the story of her life…”time to face the world, again” or something. #epilepsywarrior