The Samantha Years

Bleep Blop Blurp Blip…..

My computer died on Friday.

It gave me no warning….

No, Hey not feeling too well today, you might want to backup

No Check engine light

Nothing, just a couple computer moans and the light went dead. I sat on the couch frantically trying to reboot but again, nothing.

I feel betrayed.

The good news is that techie hubby pulled the hard drive out and saved what I forgot to backup (for about a month) AND he ordered me a new fancy, light as air, new laptop!

Hubbie is good.

The bad news is that we are sharing a computer until my new-fancy pants one arrives so I’m a little remiss on my writing.

My mother called me yesterday to remind me I’m behind in my blogging and to say she could no longer look at the picture of the great white shark …especially in relation to Samantha’s health.

Okay, I get it…..new picture.

Instead of sharks, I give you puppies in a wagon. And the news that Samantha had a good weekend and has been seizure free since Friday evening (knocking on wood over here!)

Another thing that happens when you aren’t online as much is that you miss when your friends do wonderful things, like donate over $1,300 to your Courage Classic ride.

Once again you all are fabulous. Even more fabulous than seven puppies in a wagon.

The Samantha Years

Do we need bigger boat?

Did you ever see Jaws? Remember the guards on the towers, standing there, watching for the elusive shark? Welcome to seizure watch 2010. I don’t have a tower or binoculars but the last two days have been confined to the house, documenting Samantha’s seizure activity.


Sometimes her seizure can be fleeting like a shadow. Was that a shark or a school of fish? Or pretty obvious Hey, check out that dorsal fin.

When I see them coming on, the Jaws theme sticks in my head. Duh…..duh…duh…duh..so forgive my fish analogy. Seizures are the great white sharks of my life.

The good news is that I have become the old swarmy fisherman in fighting seizures. Remember him? The one with the boat? Yeah, he did get eaten but just ignore that fact, trivial…I can spot a seizure, call a neuro, document the time and prime a syringe with seizure meds…all while singing that crazy song swarmy fisherman sang...what was that song?

We have developed a great relationship with our neurologist. She trusts me and I trust her. On days like today, we talk several times….what did you give her? What can I give her? How does she look? When is it too risky to keep her at home? The goal is to try and manage Samantha’s seizures at home, without needing the bigger boat, without needing to head down to TCH.

After day two, we’re still hanging in there. I’ve maned the Ativan harpoons and kept a constant watch on Little Miss. Currently she’s on the floor, content and seizure free since 4:50 this afternoon.

Knock on wood. Perhaps we should order sushi for dinner.

Fingers crossed for an uneventful weekend 🙂

The Samantha Years

Countdown!

The Courage Classic is less than six weeks away! I need to start taking this training thing seriously! I also need to start raising a little money for this cause so close to our heart, The Children’s Hospital.

The other day I was going up to the second floor of Children’s for a meeting. As I watched the atrium through the glass elevator, I realized how much this place and the people behind it have become a part of our lives.

We will never walk away from the Children’s Hospital; for several reasons. Samantha will most likely not be the recipient of a miracle surgery and go on to live a happy, healthy, ‘normal’ life. Samantha’s little body is fragile and will always have to be treated as such. A common cold can damage her heart, her lungs, her brain. We will always rely on our medical team to help us.

In getting to know our team, I have learned that doctors hug and doctors cheer, doctors cry, they too get frustrated, they stay up late at night to think of the best treatment for our kids.

Nurses remember who you are and although sad you’re back in, are excited when you’re back in their care. They sing, they pray, they have an affinity for Milano cookies. They step into our room and start to think of ways to make both Samantha and myself more comfortable. They send worried pages to doctors when Samantha just doesn’t look right

We give to Children’s because we are a part of the TCH community the same as they have touched our family. Because when Samantha needs to be there, I can’t imagine her in safer hands and because they truly do, love our girl.

If you too would like to give to our ride, you can do so right here: Ride with Samsmom

And hey, thanks 🙂

The Samantha Years

Bad Wife

I abandon my husband today.

On Father’s Day of all days.

I kissed his cute head goodbye at 5:00 this morning and didn’t come home until 2:30.

When I did come home, I was stinky and cranky. I took a shower and a two hour nap. Needless to say, I had a great Father’s Day!

Today I plopped my hiney on a bike for 62 miles or what is now called a metric century….sounds better than 62 miles doesn’t it? More impressive…..say it metric century…ohhhh

My stepdad, good friends and I rode the Mile High Century Ride and it was fabulous; LONG and I have a lot of work to do before the Courage Classic but it was great, great to get out.

Jim, Heather and Jonathon kicked my butt. I actually let them kick my butt because it’s Father’s Day and everything.

Not really, I am a tad doughy.

When we finished, I felt the all-too familiar internal pull to head home and check on my family. But when I got there I found them playing in the living room, watching the US Open, perfectly happy and just fine without mom.

I asked hubby if he had a good Father’s Day, just him and Samantha, no events, no plans, reading the paper, drinking coffee, sitting on the couch and watching golf.

He said he had a great Father’s Day.

Hmmmm….I guess hubby needs a little me time too, go figure.