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.

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 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 🙂

Some days call for fingerpaints; June 22 just happens to be one of those days

MMMM…Blue

Leave me alone Mom, I’m concentrating….

Look at me go!

Yes, we do have her painting by the wine rack, we’re very French that way

“To enjoy life, we must touch of it lightly” Voltaire

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.

The sun is out!

The sun is out after a couple rainy days meaning my puny three-inch plants are now blossoming into leafy little monsters.

My garden is starting to look like a small Jurassic park.

But have no idea what I planted.

This happens every year. I get a tad overzealous in my planting and forget what I actually bought until it starts bearing some sort of fruit or veggie.

Oh wow, I did plant a cucumber there. Oh hey, there’s a pepper.

It’s kind of like Christmas…..but maybe a little disturbing because I’m the one who bought planted everything…

And I still can’t remember.

And sometimes, the fact that the plant will even produce something, still isn’t a sure thing that I know what it is. Last year I was insistent that I planted a pumpkin. My sister-in-law commented on the lovely fruit growing in my garden.

“Heather, your watermelon looks fabulous!” She said.

“Oh no, that’s not a watermelon, it’s a pumpkin.”

“But it’s green, and round and has light green strips on it.”

“Oh no, it’s a pumpkin. I think it’s a special pumpkin that turns orange when it gets colder.”

I waited all summer for that silly pumpkin to turn orange.

September came about and my sister-in-law insisted I pick it and slice it open. This pumpkin/watermelon debate was driving her crazy.

The inside was a lovely shade of red and it tasted remarkably like a watermelon.

Son of a gun…..all this time I grew a watermelon….and it never did turn orange.

Today I gave my adolescent plants a little pep-talk, telling them they could grow up to be anything they wanted. Seeing that I can’t remember what they should be, I feel like I’m giving them a little independence.

Who knows what we’ll grow.

Somewhere in between hospital stays, therapy, dirty laundry, seizures, meds, tube feedings, and oxygen…..

You have to live your life.

You have to celebrate the big things

Like Amy and Shawn tying the knot.

You have to gather the village….

Even if members of the village are having some issues.

Small issues, like an upset tummy

Or much bigger issues like TWO broken legs….

Or big issues like a herniated disk…

Which means you have to watch the ceremony like this….

Or like this….Our village seems to be a little worse for the wear and is now accepting applications for a Medicine Man/Woman, any takers?

Because even if you’re not on your ‘A’ game, how can you not celebrate when approached by the Father of the Bride?

Who just happens to be wearing his dancing shoes

Oh Yeah….

And you hang out with people like this….

and of course Hubby Bubby

The rest of the Fam

My lovely ‘sister’…

And kindred spirit

Along the way you look out at this beautiful place and this beautiful time and even if your back isn’t quite right or you have not one but two broken legs or if you tummy is bloated and angry…..it doesn’t seem to matter as much.

This seems to matter a little more. Because it’s much nicer if we don’t have to do it on our own.

Samantha’s PICC line was taken out today. Her PICC (otherwise known as a Peripherally Inserted Central Catheter) has been in her arm for seven weeks. Usually PICs are accessed for about 30 days so seven weeks was getting a little long.

Perhaps it was time….

I have bittersweet feelings about the PICC. It’s a direct line into her superior vena cava….if it gets infected it could turn into a blood infection and the line has to be flushed every night to keep things flowing correctly. You can’t get the site wet so a proper bath hasn’t happened….for seven weeks.

Stinky.

On the other hand, we have accessed it many, many times this Spring. It’s been so nice not to have to place an IV when she’s sick, to be able to hook her up to IV meds when she’s seizing and to run blood tests when her lipase is through the roof.

To PICC or not to PICC?

Samantha isn’t sick. She doesn’t need it (currently) so our fabulous Dr. E made the call…..Pull the PICC.

After knocking on a couple wood cabinets and an assurance that she is healthy, I too decided it was time to pull it.

Samantha seems to be happy with her arm back. She’s looking good isn’t she?

Here’s pre-pull and the entry to the line.

Post pull with only a band-aid!

I love it when we get to remove tubes and lines. Another little baby step on the road to recovery.

knock, knock, knock on wood 🙂

When you spend two months back and forth from the hospital, things tend to slip.

The other day a sales clerk asked me if I was aware that my driver’s license had expired….

“Expired?” I said, “No way.”

“Way.”

It expired on my birthday….

Which was in January….

I thanked her because no I had no idea. I never get carded anymore. I rarely write checks. I don’t fly anywhere anymore. No reason to look at my drivers license, which just happened to be 6 months expired.

So today I packed up Samantha and we went down to the DMV. After about 20 minutes, number 64 was called and I went up to the desk to be assisted by ‘Jerry’.

“Still at this address?” He asks

“Yep”

“Height is 5’10”, weight correct?”

I haven’t really weighed what my driver’s license says weigh for a while. I decided to finally come clean, “eh, add ten pounds to that.”

“Oh that’s a pity,” he said.

Really? That’s a pity?

“Blue eyes, brown hair?” he continued.

“Hmmm, you should probably change the hair to gray.”

“Well it’s your choice.”

I wasn’t sure if Jerry was commenting that was my choice to be gray or to put said color on my license. Nevertheless, I thanked Jerry for his hair and weight consultation, smiled for my picture and walked away, legal once again.

Next time I’m going in saying that I’m 120 and blond, just to see what I can get away with.

P.S. If you have a chance, read the comments left on my Mr. Toad post. KD left a great poem on the subject and the other comments are quite lovely. Jenny, Max can come up and catch toads anytime 🙂

Summertime brings toads to our garden. They hang out by the tomatoes, under the tulips and are just well, toads.

They also get stuck in the window wells.

And they can’t get out.

And I feel bad. It’s a poor fate for a toad, to be stuck in a window well in 90+ degree weather. So a couple times a week, I gather my little garden shovel and Samantha’s sand bucket, climb down into the window well, and rescue my toady friends.

Today I rescued three little guys from the window well. Upon climbing out with bucket and shovel in hand, I found a newly-rescued, Mr. Toad sitting in the grass giving me the stink eye.

He didn’t look very happy with my valiant rescue attempts. I fact, he looked a little pissed. Before I started throwing a little Well what’s your problem Mr. Toad???? attitude, it hit me……

Maybe he has worked his whole life to live in the window well. Perhaps in Toadville a cozy little hole in the well is considered prime property, no snakes, no birds….perhaps I had just robbed Mr. Toad of his life long ambitions with a single swoop into the Dora the Explorer sand bucket.

Who do I think I am, to nonchalantly relocate my neighbor into the big, exposed, backyard without even asking?

I felt kind of bad. I apologized to Mr. Toad but he continued just to stare. Then I thought maybe it’s just Mr. Toad’s nature to be kind of grumpy.

So I watered the geraniums.

Yeah, slow day at the Schichtel household.