4 Grams

Samantha is on a crazy high-fat diet to control her seizures; the ketogenic diet. I have heard amazing stories of recovery on this diet. I’m a fan but I’ve always been a little skeptical when it comes to Samantha.

– She’s still on seizure meds.

– We do see seizures every once in a while

– It’s very hard on her body

Samantha is tube fed so we control her diet and what she eats. The ketogenic regiment requires that we measure the ingredients of her diet to the gram. She gets 126 grams of hard boiled egg. 56 grams of juice. 71 grams of olive oil. We even measure the carbs in her vitamins.

I’ve often thought what would happen if we deviated….just a little bit. I’ll read posts about a kiddo who ate cookie crumbs his sister left after a snack and then had a seizure because he went over his carb count.

Really? I would think, cookie crumbs?

Two weeks ago Samantha went in for blood work. The tests couldn’t be completed because her blood had hemolized. Her doctor was also concerned because her blood was lipemic…meaning their was too much fat in her blood to get an accurate reading.

So, all things considered, we reduced the amount of fat she was getting her diet. Bear in mind, the seizure control is based on the fat. But the reduction wasn’t huge, when everything was calculated, we took 10 grams of olive oil out of her daily intake.

Two days later, Samantha had cluster seizures. Five days later, Samantha had even more seizures. On Tuesday, we had to use Valium to control her clusters. She had seizures throughout the day yesterday and we had to use Valium again.

We clearly lost the seizure control we had.

We retested her yesterday and got a good reading on her blood work. The nurse called this morning to tell me her lipid count was still high but could increase her diet to the ratio it was before.

I’ve never been so happy to give my daughter a stick of butter.

Well, okay, it really wasn’t a stick of butter but I did put 4 grams of olive oil in her formula this morning to bring the ratio back up….that’s right four grams. We’ll put the missing six in her lunch and dinner to bring her back up to the ten we took out last week.

I haven’t seen a seizure yet (knock on wood)….usually by this time we’ve seen four or five.

Four grams of olive oil….

Maybe there is something to this diet.

Our Blog Partner!

I’ve read articles on how to advertise on your blog, how to get corporate sponsors to send you cool Mama and baby things. How to write reviews and post them to your blog for your dear readers. Hopefully, you’re persuasive enough that everyone runs out to buy Little Baby Boo-Boo’s Bodacious Butt Cream.

I’ve thought about this but my readers are precious gems. Oh yes you are….if you take time to read my weekly rantings, the last thing I want to do is waste that time to try and sell you Stan’s Stinky Sock Spray.

But when this organization contacted me, I was intrigued. It’s a good organization. It’s a humanitarian organization and I am quite honored to partner with them.

Perhaps you’ve heard of them…..

It’s the American Red Cross.

Which is pretty darn cool.

The Mile High Chapter will be posting a link on Samsmom. If you click on that link and use the code word BLOGGER, you will receive a 15% discount on Child/Infant CPR.

Personally, I can rally behind Child/Infant CPR….much more than Stan’s Stinky Sock Spray.

When Samantha has seizures, she stops breathing. Lil’ Miss can hold her breath for an extraordinary long time when she’s in the middle of a seizure. The first time this happened, it was 2:00 in the morning. I kept thinking of the CPR steps….tap and shout…911…ABC’s... I THEN realized that I hadn’t taken a CPR class in forever and I couldn’t remember the compression rate for an infant.

CRAP!

Fortunately, I never had to use the compression rate but I DID sign up for a CPR class after that. Samantha’s condition throws us many unexpected, unplanned, curve balls but I left that class feeling like I carried an ounce of prevention in the topsy-turvey world of being her mother.

So please welcome our lovely partner….The Red Cross, who has bravely decided to join on this ride. We are very honored.

Deflated

Sunday mornings at home include coffee, breakfast, the Sunday paper and Meet the Press…..tradition…

Today’s broadcast left me a little fired up; healthcare reform, fighting within congress, back-stabbing, shootings in Washington over political agendas.

It left me really fired up. Cleaning the bathroom fired up, writing a political blog post fired up. What has become of our country? Who are we if we can’t agree on anything? Why does everyone seem so angry?

The more I thought about this, the seemingly hopeless division in our country, the more my balloon of anger and despair grew. It started to fill the room.

And then I read my friend Maria’s post about Jacob’s school fundraiser. Maria gave a speech at the Bal Swan Ball regarding their journey with Jacob. She received a standing ovation and people gave thousands of dollars to the school after hearing their story.

Well that doesn’t fuel my balloon of anger and despair at all.

And then I took Samantha to a free art class, sponsored by a local therapist. Samantha painted with a therapeutic handle for over an hour. I was very, very proud of my little Monet! And very grateful to a woman who would donate her time and expertise to our special needs community.

My balloon of anger and despair started to deflate.

The grand finale was an article in paper about volunteering….that more Americans are giving back and helping their community during this time of need.

Well crap…..I am no longer angry. I no longer feel hopeless and full of despair.

My husband and I honeymooned in France. This was during the time when France pulled out of Iraq, we were eating freedom fries instead of french fries and friends wondered why we would choose to vacation in such a place.

One night we had dinner next to a French couple and we talked politics. “What is important”, the woman next to us said, “is that we are not the French government. You are are not the American government. We are only people, having dinner and enjoying each others’ company.”

So we shared a bottle of wine. Viva La France!

But it’s true, during this time of uncertainty, we cannot forget that we do not represent what is going on in Washington. We are only people, generous, intelligent people who only want what is best for our families, what is best for our lives.

My balloon of anger and despair is nothing but a tiny piece of latex.

So, instead of being angry, perhaps I will sit back tonight with a glass of French wine and just watch the Academy Awards. This is a tad ironic because I’ve only seen two of the ten Best Pictures; Up and Inglorious Basterds.

We are the only couple in the world who has not seen Avatar.

My vote? I loved Inglourious Basterds; violence and all. I think Quentin Tarantino is a crazy genius. Personally, shockingly, my vote is for anything but James Cameron. It’s wonderful to be fabulous at what you do, even better to have other people think you’re fabulous….but to tell the world how fabulous you really are, well that’s just poor form….I had to give my opinion about something 🙂

Happy Sunday.

Heather’s Amatuer Review of the Olympics

I love the Olympics.

I especially love the Winter Olympics. Perhaps because I’m from a state that has many winter games. Perhaps because I love to ski. Perhaps because Steve Holcomb, driver of the U.S. 4-man bobsledding team (who won the gold) proudly displayed his spandex racing suit to the world. Perhaps because (finally!) something beat American Idol in the ratings.

Or maybe there is more to it……

We live in a scripted, perfect, air-brushed world. Our entertainment is rehearsed, packaged, reviewed, rehearsed again….flawless.

The Olympics are not perfect or scripted or air-brushed. The snow does not fall. The snow falls too fast and too much. The torch pillar does not rise. People succeed beyond our expectations. People fall. People get injured and yes, sadly, people even die.

It’s uncontrolled. No matter how many trucks of snow you import into Cypress Mountain, there are some things us humans cannot control.

It’s kind of like life.

And it was those life stories that touched me and reminded me that no matter how strong we are, no matter how many hours we train, we are not infallible.

I cried when Georgia marched out during the opening ceremonies without their beloved luger, Nodar Kumaritashvili.

Alexandre Bilodeau, mogul skier, became the first Canadian to win a gold medal at an Olympics held in Canada. He immediately thanked his brother and best friend, Frederic who has Cerebal Palsy.

I cried again.

I cried when Joannie Rochette skated after her mother died. I cried when Lindsey Vonn took the gold. I cried when fellow snowboarders paid tribute to rider Kevin Pearce.

I have gone through five boxes of Kleenex.

I have also found a new favorite sport….the Biathlon; incredible athletes, rifles and skiing. You finish, you toss your cookies and collapse in a heap. You just can’t airbrush entertainment like that.

Every two years we are reminded of what we as humans are capable of. What our amazing bodies can do. We are also reminded that we are all blood, tears, muscle, nerves; vulnerable and yet so very perfect.

In two weeks, Vancouver will host the paralympics. Even more unscripted, un-airbrushed, raw, amazing, life changing stories.

I will need more Kleenex.

Late

It is late….

And I am tired…..

Too tired to post…

but my head feels like a pot of Earl Grey tea with so many ideas brewing in my brain

We had a GREAT weekend at Vail. We celebrated Pops’ birthday and SKIED…thanks to a vigilant, generous, Nonnie and Aunt Jen watching Samantha in the condo……

And tonight I attended my first board meeting at Foothills Gateway….

And I talked to parents of older children whose disabilities are just as severe as Samantha’s…

And those parents still laugh, smile and even get away for a weekend despite years and years of the vigilant, high maintenance parenting required with these fragile kiddos.

I left feeling lighter and quite hopeful.

Long weekends are the best.

Defenders of the Chair

Samantha has been sick all weekend. The last five days included suctioning, copious amounts of Vicks vapor rub, calls to TCH and finally…..antibiotics. This morning I found her awake, smiley and significantly less snotty. Therefore, Mean Mommy packed her up and headed off to preschool.

I always worry about taking Samantha on days like this; days when she is not 100%. I weigh the pros and cons of a school day and keep my cell phone close. If she only attended on 100% days, she would be missing quite a lot of school.

So we take our chances.

I carried Samantha into the classroom and was immediately greeted by one of her friends. “Samantha! Samantha’s here! Samantha!”

Wow, well that just made my day! The kiddos helped to get Samantha settled; helped with her coat….everything seemed just ducky and I got ready to go.

Samantha has a chair that we keep at school. She’s getting bigger so we need to have it refitted. On my way out, I casually grabbed her chair to take it home.

Oh no…..

Samantha’s friend stood in front of me, hands on his little hips, staring intently.

“That’s Samantha’s chair!”

“I know Sweetie. But I need to take it home to fix it. I’ll bring it back for her. Is that okay?”

He shook his head no.

“Hey!” Another little guy joined in, “That chair is for Samantha!”

I was suddenly surrounded by tiny tikes slightly taller than my knee and very unhappy that I was taking Samantha’s chair.

With a little coaxing and a lot of promising that I would bring it back, I was allowed to leave.

Whew! Adamant three-years can be a little overwhelming!

With the events of Deer Creek fresh in my mind, I worry about Samantha protecting herself. It is wonderful to know that she has friends who come to her defense…..three year olds who come to her defense…..her mother-can’t-even-get-her-chair-out-of-the-classroom defense.

I wouldn’t want it any other way.

JAWS! By Samantha

Now, you would think that raising me would be enough excitement for Mama….

But no, she needs a little something else, a little reminder that she is still young and daring.

So I give you Mama, and a tank full of sharks….

You can see Mama’s tanks up towards the left.

Here she is with the dive master

A little Chum for Chum…

Of course Mama needs to get the family involved….here’s Pops hangin’ with the sharks too….

Mama in her fishbowl….

BIG TEETH!!!!

Mama throwing me a kiss. I am not happy about any of this!!!! Grandma Judi trying to tell me that Mama probably doesn’t taste very good.

In the shark tank with a buddy checking us out.

Nonnie telling Pops how to get out of the tank….take your first left and turn right at the shark

Even the tiger thought she was a little crazy…

I am very concerned about this behavior!!!!

Pore

I have developed a pimple on my chin.

It has not gone away.

I play at it, pick at it, but it will not heal….it’s something beneath my skin that will not go away.

Kind of like this week…..This week is the Children’s Hospital Radiothon (if you can give, please do)….incredible, miraculous stories of healing and hope. Children who have entered the hospital with failing hearts, brain tumors, failing little bodies and have left that building….walking, talking, playing sports…perfectly normal.

Miraculous….truly, many of these kiddos would not be alive 20, 30 years ago. I listen to these stories, marvel at their fortune and pick at the annoying pimple on my chin.

This week an amazing video was released of a child who suffered a near-drowning accident. This child was in a coma, breathing tube, PICU and is now perfectly fine….like nothing happened. It’s an amazing story but it has rocked the world of my friends whose children are severely impacted due to an anoxic brain injury. Why weren’t these families the miraculous families?

I don’t know.

Is it okay to be envious that your family is not the miracle?

Yep.

Is it okay to be a little pissed?

I think so.

But sometimes, as a society, we are not so good with the envious and pissed. We don’t know quite what to do. It’s much easier to join ranks with the miraculous. It’s much more fun. And in the world of fund raising, big miracles raise much more money.

My conclusion? I have none. So I pick at the clogged pore on my chin. Is it envy? Is it anger? A lack of personal hygiene? A combination of all three? Perhaps it should be released….popped like a balloon….perhaps it would heal…..or maybe not.

Tonight

Tonight was a fabulous meeting of the Supermoms.

We discussed super topics…..

G-Tube vs. Oral Feeding

Generic Keppra vs. brand-name

Whose child had brain surgery…..whose seizures are under control

Just another day.

We wished a Supermom safe travels as she journeys to Europe and leaves her sweet boy for a week. We shared in her anxiety and her excitement…..because all Supers have to leave the headquarters every once in a while.

And we drank margaritas.

I listened to Pink on the way home. It’s just what the Supermoms do to me….give me a little attitude.

Love Letter to Holden Caulfield…..My tribute to J.D.Salinger

This post can also be found Under the Cuckoo Clock

It’s really too bad that so much crumby stuff is a lot of fun sometimes. ~J.D. Salinger, The Catcher in the Rye

Oh Holden!

We meet in Mr. Stough’s English class. You were so real, so jaded, so naughty. You smoked, you drank, you flunked out of school.

And yet we were told to get to know you. It was an assignment! Who was Holden Caulfield? What were his dreams? His failures?

It was the happiest day of my young, English Lit career.

So different from Huckleberry Finn, the sonnets of Shakespeare, you were tragic like Hamlet but so relatable! You Holden, would never wear tights and hold a conversation with a skull. You were way too cool.


Oh Holden! You were nestled in my book bag, with your dog-eared pages I circled quotes where your voice touched my inner teen-angst! I had found my soul mate. If only you had been here as a senior at Bear Creek High School! We would sneak cigarettes in the parking lot, we would wear black, listen to the Smiths and comment that everyone else was a phony and that goddamn money….makes you blue as hell.

It would be perfect.

And then we moved onto Beowulf. A knight, a slimy water monster, 1,000 years ago….nothing to do with teenage angst.

Nothing I tell you.

Sadly Holden, I am now older. Today if I sat with you out in the parking lot, I would tell you to stop smoking, call your parents, stop pissing away their money, buck up and go back to school.

Sadly.