There Are Certain Things That Should Be Left

It's taken half a year, but I'm finally released. 

Released from doctors, surgeries, procedures, lab tests, emergency room visits. Sadly, these are all the memories I have this year. When did my irises bloom? I haven't a thought, but I've met a lot of excellent nurses who can put an IV in my armpit like no one's business.

The surgery to correct my sphincter of oddi in March fixed me enough so that I could eat, but not enough to be out of constant pain. The doctors explained it was my pancreas (that they should have, but were unable to, put a stint in during the procedure) and thought we should wait until September to revisit it. Aaron insisted they handle it immediately, and thank goodness.

In late May I had another procedure, supposedly 30 minutes to put a small stint in my pancreatic duct, which turned into a four hour surgery to reroute and correct pancreas divisum that was so severe, the doctors seriously doubt the scar tissue on my pancreas will ever heal.

So. There you go. If there's a 25% chance of something happening, it won't. But if there's a less than 1% chance, I'm your gal. 

Except for lottery tickets. RIDDLE ME THAT.

 So now, we're done. The stint had to be removed (because I wasn't in the 95% of people that just have the damn thing fall out naturally) and we're over two weeks out. I can start an exercise routine (I've been pushing the stroller around the block the past few evenings - my legs and shoulders hurt), I can go be out in the world and not worry about crazy stabbing kill me now pains (unless I'm gluten'd), and I can just go be.

Which is fucking fantastic.

So now I'm watering plants and children. Enjoying the sunshine. Trying to figure out what the hell happened to my garden. Not lying in bed all day.

I really can't describe how fucking fantastic it all is.

She Loves A Lot of Things

Griffin's school play is tonight, and he's all out of sorts because I didn't get him a white shirt and black suspenders. One would tend to think that a white shirt and black suspenders wouldn't be so difficult to attain, but after a month of looking I simply refuse to pay full retail for a white shirt and black suspenders for a one-day, two-run school performance and never be used again.

I told him he can make do with a shirt from the closet and thrifted suspenders. It will be fine. Really, it will.

He wasn't so convinced.

The first performance was during the school day, and he was all smiles at pick-up. 

"Mama, my suspenders are snazzy."

Yeah, You Buckle with the Weight of the Words

At this point in my life, I should be able to recognize that my own manic behavior is a sign something is going to happen... but, no. That is a lesson I have not yet learned.

I certainly hope I learn it soon.

Yes, it has been awhile. No, it wasn't intentional. But I'm tongue-tied and twisted. I feel it needs to be said, but I don't know how to say it.

After I stayed up late, manically trying to write my last post, I went to bed. Two hours later I was up, Aaron called 911 and the medics who came to our home thought I was having a heart attack.

Nothing says welcome to thirty-five like medics telling you are you having a heart attack (even if you don't believe them).

Five days later I was discharged from the hospital with a diagnosis of an acute pancreatitis with elevated liver enzymes. No explanations why this happened - in fact, every reason why this could have happened was ruled out for me: I don't drink (especially since having my gallbladder removed), I don't smoke; my cholesterol and triglycerides were on the low-end of normal. The hospital did every scan possible to try and find a rogue gallstone blocking something - nothing (but I was told that I "won the award" for holding my breath the longest and best in the CAT scan). I was discharged to "resume my normal life" and "cross your fingers it doesn't happen again."

Two days later I was at urgent care with a fever a chills, more tests ran. I was put on a liquid diet.

Three nights later I experienced another "attack" but since I knew what it was, I took a pain pill and went to the doctor the next morning. More tests were ran.

The next day I was told to "urgently" see the GI that was over my care while I was in the hospital. I got an appointment to see her the next day.

She looked at my hospital tests and all the test ran since my discharged. She had an idea of what was wrong: I had sphincter of oddi dysfunction.

We had never heard of it. Only two doctors in Kansas City work with patients with this, and the wait lists are months long. And more tests have to be ran to rule out other diagnoses.

To get from there to here was a long road. Many test. Many ER visits. Nineteen days of a liquid diet followed by 25 days of a clear liquid diet. Threats of hospital admission or an in-home health aid to administer IV bags. Thanks to friends on Twitter and Facebook, my wait was cut shorter to get in to the specialist, but over 40 days of being on an exclusive liquid diet messes with your brain, with your organs. Yes, I lost 40 pounds in less than a month. No, I would not recommend it.

The sphincter of oddi is a tiny, one millimeter in diameter sphincter and muscle. When you eat, the food travels from your stomach to the digestive tract. The sphincter of oddi opens and allows the digestive enzymes from your liver and pancreas (and gallbladder, if you still have yours) to travel to your digestive tract and the enzymes help digest your food.

For a person with sphincter of oddi dysfunction, the sphincter does not open. Instead, it closes tightly and spasms which signals to the liver, pancreas, and gallbladder to release the enzymes - typcially into other organs and your blood stream.

When we finally got to my surgery day, they were unable to complete everything that needs to be done (which likely means more surgeries - yes, plural - this year); when they did a pressurized test of my sphincter of oddi, they said they would cut it open if it registered a pressure over 40.

Mine registered a pressure of 170.

The surgeon told my husband, "No wonder she couldn't eat."

Yeah.

So, no I'm not 100%. And that's ok. I'm slowly getting there. I can eat breakfast. And a decent lunch. And sometimes a snack. But no, my pancreas and liver are "still mad" and we're still figuring things out.

Aaron took four weeks off of work using FMLA leave to take care of me and run the household. This will be able to cover any additional hospital visits (goodness, I hope not) and potential surgeries for the rest of the year.

Life doesn't stop, even when it feels like you are 20 feet under water and struggling to survive.

Griffin turned ten...


Darwin continues to be Darwin...


Emerson continues to grow and has hit full-fledged "toddlermonster"...


I swear, that's the stink-eye of a teenager right there.

And spring has come to Kansas...


... even if it means I'm tempted to get a chain saw and destroy every last blooming oak tree in the city.

I've missed this space. As much as I don't want it to medical diary, it is what it is.

And it will be what it will be.

I'm hoping to find the happiness along the way.

This Ain't No Foolin' Around (+ a Gluten-Free Birthday Cake Recipe)

Monday was my birthday.

Which means I did what any reasonable person did: I fantasized about cake for months.

Full disclosure: if I weren't gluten-free, I probably would have ordered a fancy-smancy cake for myself from some fancy-smancy bakery. But, heh, as good as Kansas City is with the gluten-free, it's not that good.

Good thing I like to bake.

(Oh yeah, me. Not Aaron. You heard that right.)

Criteria for a only-girl-in-the-house's birthday cake: it must be pink; and multiple layers; and good.


Aaron got home from his business trip late Sunday night (lucky man), and then home after 8pm on my birthday (not-so-lucky-man) (I will not discuss the projectile vomiting Emerson did around 7pm, after I gave him the tiniest smidge of buttercream frosting) (oops), so cake was served late.

Gluten-free Vanilla Birthday Cake with Vanilla-Cherry & Chocolate Buttercreams

Vanilla Cake

1 cup unsalted butter, at room temperature
2 cups sugar
4 large eggs
1 tablespoon vanilla extract
1 cup whole milk
3/4 teaspoon salt
1 tablespoon baking powder
2 1/2 teaspoons xantham gum
3 tablespoons corn starch
2 3/4 cups gluten-free flour mix*

Preheat the oven to 350; butter and line two 9 inch circle cake pans (or if you have a smaller size, whatever) with parchment paper.

In a stand mixer (or large bowl), cream butter and sugar until fluffy, scrape down the sides. Add the eggs one-by-one, vanilla, and milk: once you add the milk it will look like cottage cheese and this is totally fine, don't worry. (Welcome to gluten-free baking!)

Scrape down the sides, and sprinkle in the salt, baking powder, xantham gum, and corn starch; scrape down the sides again (dude, I know). In small batches, sprinkle in the gluten-free flour until fully incorporated. Stop the mixer, scrape down the sides, and incorporate any remaining bits by hand. Divide the batter between the two cake pans and bake 20 - 25 minutes, or until slightly golden and a toothpick comes out clean. Cool completely.

*I prefer to use King Arthur's All Purpose Gluten-free Flour mix (and I only wish I could be paid for saying such a thing)

Cherry-Vanilla Buttercream
(I made a 3/4 batch for this cake, a full batch would have made for a prettier cake)

1 cup unsalted butter, at room temperature
6 to 8 cups powdered sugar
1/2 teaspoon salt
1/2 cup half & half or heavy cream
1 tablespoon vanilla
1 tablespoon (or more!) of maraschino cherry syrup

In a large bowl (preferably of a standing mixer), beat butter until light and fluffy, two or three minutes. Scrape the bowl, add one cup of powdered sugar and salt, and mix. Add vanilla and cherry syrup to half & half or cream, and slowly add to butter/sugar mixture. It will look awful, it's okay. Trust me.

On low, slowly add 1/4 cup scoops of powdered sugar; add more sugar and mix until desired consistency. If the frosting looks watery, add more sugar. Transfer to another bowl, if you are making the chocolate buttercream afterwards.

Note: If you want it pink without the cherry, do it how you like it! But if you are adding syrup be sure to use at least half & half or heavy cream, not milk, because milk + syrup = too much water, not enough fat. (I found the cherry syrup in the local grocery with - of all things - maple syrups.)


Chocolate Buttercream
(I made a half-batch of this for my birthday cake)

1 pound semisweet chocolate chips, melted and cooled (I use Ghiradelli brand)
1/3 cup unsweetened cocoa powder
1/3 cup hot water
1 cup (2 sticks) unsalted butter at room temperature
2 to 3 cups powdered sugar
1 teaspoon vanilla
1/4 teaspoon kosher salt

Whisk together cocoa powder and hot water, set aside.

In a large mixing bowl, beat butter and one cup powdered sugar until light and fluffy. Add vanilla, salt and cocoa-water mixture. Slowly add melted chocolate chips.

Slowly add more powdered sugar until it's at a consistency and sweetness you like. You can also put the mixture in the fridge and beat occasionally.

If you beat the mixture a little, you will have a dark, dense, rich chocolate frosting (like in photos). If you over beat you will have a light, fluffy, whipped chocolate mixture. Make it how you like it.

You ready for cake? Let's finish!


Split the two 9-inch cakes in two width-wise, to end up with four cakes. Put the top of one cake upside-down on your platter, surround with strips of parchment paper (unless you like the frosting-everywhere look; in which case, go on with your bad self!).

Put some cherry-vanilla buttercream in a frosting bag (or do what I did, put some in a plastic bag and snip a corner off), and outline the outside of the cake with the pink frosting (this prevents chocolate buttercream from seeping out the sides). Spread chocolate frosting in the center. Place the other half of the cake on top of the frostings, smush down. Repeat the layers, then frost the outside in the cherry-vanilla buttercream.

Then have your children decorate with sprinkles.

Then you go have yourself some birthday cake too.

(Both Griffin and Aaron have birthdays in February and they are already plotting what they want.)
(Hold me.)

Like a Boss

I always get a little slap happy (confession: a lot slap happy) when Aaron works his crazy-ass schedule and, especially, when he travels.

We're on day nine of a not-yet-time-determined trip.

Which explains why I sing this all day (alert: not safe for work, not safe to play around the kids - but you can get by with the first 30 seconds to get the gist) .

make breakfast LIKE A BOSS

feed the dog LIKE A BOSS

do the laundry LIKE A BOSS

send emails LIKE A BOSS

scrape the van LIKE A BOSS

drop off kids LIKE A BOSS

do some shoppin' LIKE A BOSS

forget apples LIKE A BOSS

make some coffee LIKE A BOSS

update files LIKE A BOSS

sort spreadsheets LIKE A BOSS

make a sippy LIKE A BOSS

change a diaper LIKE A BOSS

wash my hands LIKE A BOSS

go up the stairs LIKE A BOSS

trip on the last step LIKE A BOSS

See? I can go on and on.

edit photos LIKE A BOSS

answer the phone LIKE A BOSS

build a fort LIKE A BOSS


wash peppers LIKE A BOSS

slice peppers LIKE A BOSS

eat pepper slices LIKE A BOSS

Oy. See? Out. of. my. damn. mind.

publish this post LIKE A BOSS

To the End, Always the End

Sitting at the table, with pieces of broken gluten-free pretzels...


"Mine, mine, mine. Ky-wee. Mine. Ky-wee."

There's no question where Kylie the not-really-a-puppy-but-we-still-call-her-a-puppy's weight gain is coming from.

(We won't discuss where my weight gain is coming from.)

(Cookies.)

It Sounds Like a Whisper

Happy new year to you.

I keep flipping between excited and nervous for a new year. I feel it in my bones, this year will be different (and hey, maybe in part that will mean conquering some of the hoarding tendencies in this house) (I sure do hope so).

We have a lot of changing already happening, none within our control. It's becoming a strap-on-your-shoes-and-do-some-ass-kicking moment. I feel like I kick enough ass as it is, thanks, but apparently more needs to be tackled. So tackle it I (and we) will.

But in the between, I'm looking to the light, to the hope for happiness and ultimately the best outcome for my family. To three smiling little faces who wrestle and scream and run in the house, who chase the dog and tickle each other and join me in my crazy kitchen dance parties.


It's an adventure, this crazy little life.

It's Too Close For Comfort

Yes, it is completely possible to live without a gallbladder.

But I wouldn't recommend it.

Other things I would not recommend:

nerve damage

getting gluten'd

deciding to tear down and rebuild a walkout in less than 48 hours

going outside in the ice. or snow. or rain. or blistering heat.

All in all we're fine. Getting back to normal - at least, finding a new normal. A new normal with lots of pills to counter-balance the loss of a gallbladder.

Today is the day we begin our advent calendars, also known as let's see how crazy the Lego people got this year. We haven't opened them yet, but I'm on pins and needles to do so.


And yes, Emerson has gotten quite artistic around here. His favorite medium is purposely spilled godawfullyexpensive formula.

I'm quite convinced the is the precursor to watercolors.

Lost in a Maze of a Thousand Rainy Days

I'm pretty certain I've finally washed the remaining hospital adhesive off my arms, legs, abdomen. If not yet, then soon and damn that's taking a long time.

Last Monday, Emery had his stomach scoping. It was scary but he came out of it all well and good and Tuesday morning Aaron hopped on a plane to Chicago 'cause it's Business Trip Season as in, hopefully we'll see him a few days a month between now and the New Year.

Businesses take heed: we'd appreciate if you would budget better and not decide to do all your work during the holiday season

Wednesday early morning I woke with Emery and felt awful but convinced myself it was in my head... a couple of hours later the allergist told me to call 911 (eh, breathing problems were involved) and instead I took a pain pill to deal with it all later in the day.

A few hours later I was in ambulance apologizing for being dramatic while the EMTs freaked out over my low pulse ox readings and ma'am, would you like some morphine? No thanks, I don't want to be dramatic.

Heh.


After a few tests, with my dad fretting in the ER with me (he simply does not do well in hospitals) (and my stepmom was home with all the boys), I was admitted. More tests over. Really, I swear - the pain was going to stop soon.

photo courtesy of miss chris

A visit from a good friend (who pulled my hair back while I was sick, oh how hospitals can be so humbling), and a nuclear test later they were certain - my gallbladder had "died" and needed to come out.

Hand to heaven, that's what the surgeons and nurses said, died.

Aaron's swift return home. Surgery. Recovery. It's all blur.


Truth is, I've felt off for quite awhile - but chalked it all up to having a sleepless toddler (2am is prime Party Time, doncha know), with a variety medical problems we're trying to figure out.

Speaking of which, the pathology reports from Emery's scope came back and he has Eosinophilic Esophagitis, which explains his constant puking-of-real-food-but-only-rarely-his-special-formula.

So. sigh. New medicine starting this weekend. More scoping in a few months. Hoping to work with therapies that he can grow and begin eating like a normal child and not (nearly-worst-case scenario) needing a feeding tube in his belly.

I mean, really. Really. This isn't suppose to be a medical blog.

And You Think You'll Burst Apart

A few weeks ago I decided I was tired of this shit, "shit" in this case being all of Emery's constant puking and called the GI office at the local children's hospital.

Two days later we were in the office, talking to the doctor - who I will never, ever visit again. Anyone who thinks I'll pay him to treat me like I'm stupid obviously isn't nearly as intelligent as he'd like to believe.

The next day we were at the Occupational Therapist getting Emerson tested for a behavioral problem with vomiting; he was cleared of that diagnosis.

The following day we were in Radiology having the worst x-ray experience of my life, where they fed him barium and ran the machine like a video feed, rotating him in this 18th century torture contraption. They thought he had a mal-rotated intestinal tract, but after another hour (!!!) of testing they deemed him anatomically perfect.

The next week the GI's office called to say they have a diagnosis! He has acid reflux!

My reply? "Um, yeah. I know. That's why I brought him to the office to begin with."

So, here we are - now waiting for a stomach scope. Which they have to do in in-patient surgery due to his food allergies. Where he will be put under with anesthesia. I am not looking forward to that.

A day later, I came down with Strep and here we are, more than a week later and I'm still not made of awesome - I blame the crazy antibiotics. I'm sure you'll agree.

I've had the honor recently to participate in two quilting bees. One, a quilt for Jacquie (oh, how we will miss her from KCMQG!) and a very special quilt of love. Both ladies put into words what I simply cannot.

Today is my and Aaron's 11th wedding anniversary. Three kids and one crazy puppy later, here we are: old, going gray and we still like each other. WIN!

Tonight we celebrate as a family, ordering pizza, family movie night and bakery cupcakes. Monday we'll celebrate as a couple, dinner out and tickets to see Death Cab.

I think this may beat last year's hardy high-five in the kitchen.

In other news, have you seen Emerson?


Emery? Where are you?


Peek-a-boo! There you are!