I am suffering from an acute case of stay-at-homeitis followed by the what-did-I-do-today flu.

Perhaps it’s a lack of focus, perhaps it’s the weather…maybe I need a hobby.

I have too many hobbies; perhaps that’s part of the problem.

When I was ‘working’, I had a project or several projects that I was seeing to completion. Someone would come up to me and ask what I was working on and I had action items, lists, agendas, meetings, conference calls….all intended to complete this project.

Focus.

And I had cute little shoes, a matching handbag and a lunch date.

My action items were never interrupted with a never-ending pile of laundry, dust bunnies and a gaggy, cranky two-year old or even more distracting, a cuddly, warm, smiling, adorable two-year old; this turns the action items into more of a wish list.

This does ensure job security.

Which is a nice thing in this economy. But my lack of accountability has left me wandering….searching for my focus….perhaps it’s under the couch….with my dust bunnies.

There’s been a lot of talking and a lack of pics on Mama’s blog! So I’m taking over….yet again. Princesses need to be seen!

A couple days before Easter…still in the hospital with one of my HUGE bunnies.

While in the hospital I developed quite an affinity for my balloons.

Gettin’ ready to break out of the ‘big house’

Tickled to be going home!

At the park and even cute having a little fit!

Fortunately Daddy was able to calm me down. I have become quite the Daddy’s girl as all good princesses should be!

I used to think you would drive along, stop off somewhere…have some coffee…talk to the locals…move on…and that was it…onto the next exit. That was your life; moving forward…

Life is a highway…I wanna ride it all night long Go Rascal Flats…seriously cheeeeeeesssssssyyyyyy….but it’s my new mantra.

Why Heather WHY?

I’ll tell ya why….last year I got a little weepy around the Epilepsy Walk and it’s happening again.

We have earned $1,200.00.

That’s a lot of money.

From people from ALL over the world; from my family, from my friends, from people all over the world…making donations in a cyber cafe in Cambodia (Ryan, that was TOTALLY for you!) people I knew in high school, people I knew in Garmisch.

I have realized that these people you meet along the way, in your road of life, never leave and that is a good, good thing. ‘Cause I’m cruising along…in my station wagon…wishing it was a turbo, convertible without a car seat….(ok, just sometimes)

But it’s not.

And just when I start to wonder about this road I’m on, there you are. You pull up beside me, wave and honk your horn and it doesn’t matter if I talked to you yesterday or ten years ago because suddenly we are the same path.

If only briefly.

And I am grateful.

So grateful I wonder how many batches of chocolate chip cookies I can make.

But it doesn’t matter. I LOVE that you have joined this road for a little bit.

Cause if you’re goin’ my way, I wanna drive it all night long.

Rascal Flats baby.

Love you all.

We are so PROUD to be walking in Denver’s Strides for Epilepsy on Sunday. Our team is the Sammer Hammer…..Pounding out a Cure for Epilepsy…and so far our lovely team members have raised $800.00 in Samantha’s name.

WWWWhhhooooppppeeeee!!!!

Why is this important?

Newsweek just published an article on Epilepsy with sobering, scary information about this misunderstood and under-funded disease. You can access it at http://www.newsweek.com/id/193586/page/1

Here are some quick facts:

– Epilepsy in America is just as common as breast cancer and takes as many lives
– More than 3 million Americans are affected by it—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined
– Public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis)

While epilepsy has gained more attention due to Sen. Edward Kennedy and Sr. Advisor David Axelrod (his 27 year old daughter has seizures). We still have a long way to go and research is truly the key to finding a cure.

So join us this Sunday, April 19th to walk, run, stroll for epilepsy and for a life….for some many….without seizures.

If you would like to join the Sammer Hammer, you can sign up at

http://events.epilepsycolorado.org/index.php?s=44&group_id

See you Sunday!

We were discharged on Friday!

And without a PIC line!

While waiting for the PIC, Infectious Disease played around with other antibiotics and found a med that Samantha could take orally. We could go home. We could go home without a PIC line. What could be better?

Perhaps a weekend in Vail.

Yep. We packed up out of the hospital, drove home, packed up the car and drove to Vail for the weekend. We already had plans to be in Vail but the million dollar pic-line question was could we make those Vail plans happen?

Where there’s a will, there’s a way.

I packed like a banshee. I threw meds from one bag into another, made sure we had enough oxygen for Samantha, slammed a cup of coffee and tossed the skis in the car.

We were off.

Was this the doctor’s idea of a relaxing weekend at home? Maybe not. But Samantha didn’t care where she was as long as it wasn’t the hospital and someone could cuddle with her at her demand. We spent the weekend with Pops and Nonnie who were happy to cuddle, coo and snuggle with our little patient. As a result, a relaxed Samantha did something she didn’t do the whole week at the hospital.

Samantha slept…and slept….and slept.

And Mama did something she didn’t do the whole week at the hospital.

Mama took in the fresh scent of pine trees, shoosed in the spring snow, howled at at the blue sky and yes….Mama slept too.

This protocol should be mandatory for all discharge instructions.

Happy Easter.

We are waiting to go home. We have been waiting since Wednesday. On Wednesday we found out that Samantha’s infection is sensitive to an I.V. anitbiotic. I.V. antibiotics are not our choice but we can go home on them with a PIC line.

“So let’s do a PIC.” I say on Wednesday.

“We can schedule the PIC for Thursday and you can go home after that.”

Fabulous.

Thursday morning roles around. We have denied poor Samantha breakfast so she’s ready for the procedure…..let’s get things goin’!

“The procedure center is all backed up and they can’t do the PIC until tomorrow.” I am told.

Seriously?

Look at this squirmy, pink child wiggling in the bed. She feels good, it’s time to go. No, we have to wait until tomorrow….another night in the germy, noisy, hospital….until we get a PIC.

Here’s irony for you. Children’s has these yummy coffee machines that will make you a personal latte’ or mocha. They are taking away the foamy milk and chocolate because the little packets cost too much. This makes me sad because I like my personal latte’ but hey, times are tough and I will make my sacrifices.

Until I realized that if we went home yesterday, the hospital would have saved enough money to provide us latte’ deprived families with yummy foamed milk for a year.

It’s the little things in life.

Ridiculous.

Samantha is in because of a new infection. It wasn’t her ear…it was another crazy, nasty UTI.

Bad.

Looking for our silver cloud, we have changed Urologists which I feel very good about. We are deviating from the Children’s system to Presbyterian St. Luke’s for this doctor. I feel a little guilty but hey….they are taking away my foamy milk! We are also going to see the Immunology Clinic at National Jewish. We’re getting serious here.

Good!

Another good is that I now sit on a couple Boards at Children’s Hospital. One met while we were in this week and I was able to express my ‘discontent’ at being held hostage for a PIC line and being re-admitted 48 hours after discharge. These are big deals to the big-wigs at hospitals and I think I made my point heard…..so much so that they are considering some policy changes.

Chiping away to change the world….chippy, chippy, chippy.

Samantha is as cute as a bug. She’s laying next to me playing with her balloons and thanks you all for your good wishes and prayers.

I’ll tell ya. We need a fast-pass admittance into Children’s or something. A little green card that let’s us bypass all the piffle. Piffle is my new word for the day; it basically means crap. If I have to tell another admittance nurse Samantha’s history, that we don’t smoke, we don’t have pets and yes, we do have a telephone at home, I will go absolutely bonkers….bonkers with the copious quantity of piffle.

Where, I ask you, where are the answers to these questions from last week.?

It’s the electronic age. I know it stored somewhere in her file that we don’t have a cat and that we feel quite safe in our home, thank you.

Piffle

Speaking of piffle, it is piffle that we are back on the 8th floor….again. Sweet Cheeks got home from the hospital on Thursday afternoon. We were looking forward to a nice weekend recovering and watching the snow. Friday she wasn’t quite herself. Saturday she woke up after a five hour snooze screaming and writhing in pain. A dose of Motrin and Ativan did nothing. Two hours of trying to comfort an inconsolable Samantha lead us to pack the car and head back down.

Fortunately, we were at Grandma Judi’s and Grandpa Jim’s. The car was packed in two seconds and we had a shorter drive to the hospital. Samantha decided to make the night a little dramatic by holding a 104 fever for a while and really, remaining in quite a lot of pain.

I have to say, Samantha pain is awful. She can go from 100 degrees to 104 in a matter of minutes. Her back arches, she screams, her heart-rate goes up to 160….and stays there. This goes on for hours AND after you have thrown in a gammet of calming, fever, pain reducing drugs.

Piffle.

18 hours later, she is sleeping soundly due to some heavy duty drugs and a couple doses of Vanco. The question now is why did she spike? Do we leave her on Vanco or see if there is another reason why she is sick? And really, when do we get to take a healthy Samantha home? We are putting a care conference together tomorrow to see if we can come up with a plan.

Piffle.

Ick-a-roo….such a nasty bug.

So, it is confirmed that the critter who has taken residence in Sammers ear is MRSA.

That’s the bad news.

The good news is that we think we caught it early enough so that she doesn’t have to have a PIC line and she doesn’t have to go home on I.V. antibiotics….we think….This is good news for many reasons.

1. PIC lines are evasive and direct lines to Samantha’s heart
2. They freak her mother out
3. I.V. antibiotics are administered around the clock so no one sleeps
4. Everyone is happier when they sleep
5. Vanco is a tough antibiotic…hard on the entire system and something you don’t want to become resistant to…the less time on Vanco, the better.

So keep your fingers crossed for oral antibiotics!

On another note, they let us make her formula here in the hospital. This was great because the canned soy nasty RCF is hard on her tummy. She would much rather have coconut milk and Odwalla Super Food. I went out and purchased everything we needed; came back to the hospital and realized that we didn’t have anything to store her formula in. A bottle was too small. The container needed to have a wide-mouth opening to pour all of the ingredients into, a tight seal on the top and a side volume indicator would be helpful too….what to do….what to do.

Ironically, a container typically used for ‘output’ rather than ‘input’ seemed to work perfectly…..a urinal.

We are mixing and storing her formula in a plastic urinal. Hey, it’s sterile, has Samantha’s name on it. NO ONE tries to drink from it. I think I’m onto something 🙂 Call me the Mother of Invention.