Heart Hurt

I got a text from Jay about two weeks ago. It said just a few simple words: "My heart hurts."

That was sent to me while we were in the ER. Lainie had a seizure. There would be no weaning off meds. The label "epilepsy" would continue to be tagged on her IEP, medical records, on her. And with each additional seizure, the hope that she'll outgrow the seizures fades into history.

I learned these past few weeks there are a few quick ways to break your mama's heart. And my kids have tried a few of them.

Headache

1. Hurt. This is a photo of Natalie on the way to Children's Mercy to try to diagnose her headaches. Not sure of a diagnosis, but at least the headaches stopped when they treated her pneumonia, which we didn't know she had at the time. My baby girl has looked like this on and off since Thanksgiving.

Standing

2. Grow too fast. John learned to pull himself to a stand and creep along with one hand while being entertained in Natalie's hospital room. The awesome staff at Children's gave us a (sanitized) exercise mat and two big padded rectangles to make a sort of confined space for him.

"I'm OKAY!"

3. Worry about everyone else. This was sent from the ER to let sisters and Daddy know Lainie was a-okay and back to her crazy Lainie-land ways.

----

Seizures are our monster. Hey, at least it has a name. It is always lurking the shadows, always scary, bringing on nightmares. And just when you think you have slayed the monster, he returns.

But you know, I think we've gotten "okay" with them. When Maggie had her seizure back 8 years ago, my response was a loud F-bomb. Lainie's first one drew a sh**. The next one a damn. And so on. We didn't even cuss with this one. Just told Jay to get her med, kicked the other girls out of the room, and took care of her. Our acceptance of a seizure kind of hurts my heart.

Apparently, it hurts Daddy's heart a bit, too.

Divine intervention and bad luck

We've had a string of bad luck, or at least, bad health. Katie and I had some sort of bronchitis or pneumonia. Lainie and Natalie had confirmed pneumonia. John has bronchiolitis. Jay has pneumonia. Lainie had a febrile seizure, just ten days short of two years seizure free. Natalie fought debilitating headaches for three weeks and spent a night at Children's Hospital. All in all, our 12 days of Christmas this year looks more like 6 antibiotics, 5 chest xrays, 4 doctor visits, 3 lab draws, 2 ER visits and 1 hospital admission.

But, there is some amazing divine intervention in all this ickiness.

On Friday, the plan was for Jay to take the kids to St Joe and for me to stay home with John and rest. But, Natalie's been fighting headaches and they scheduled an emergent MRI for her in Manhattan on Saturday morning. Then, Lainie spiked 103.5 fever Friday night, seizure free but scary. So then Jay and I were going to divide and conquer, but I was worried about being the solo adult with Natalie's headache, John's neediness, and Lainie's fever. So, instead we all traveled to St Joe on Saturday afternoon.

Fast forward to about 5 p.m. Saturday night.

Lainie had her seizure at my cousins' house in St Joe. She was in the basement watching TV. Jay had been on an errand and I had been shopping not more than thirty minutes before the seizure started. We had been upstairs but I decided to start picking up the girls' stuff. I walked downstairs to look for a backpack, just as her seizure started, allowing me to move her to the floor and be there.

An hour earlier, Jay and I wouldn't have been there. An hour later, we would have been in the car in the middle of northeast Kansas. Ten seconds later, she would have fallen off the couch.

Instead, we were in my cousin's house, the cousin who knows seizures and has witnessed them most of her life. Jay was able to stay with the kids while my cousin and I took Lainie to the ER, not for the seizure but for the 103+ fever.

And, Thank God, the seizure stopped on its own. For Lainie, it was a pretty minor one, just about 90 seconds of a tonic-clonic. We give credit to the Trileptal for that, the antiseizure maintenance med she takes and was supposed to be weaned off of in March. That's not happening now.

----

More divine intervention. Natalie's been battling headaches for weeks. She had an appointment on Wednesday with the neurologist at Childrens. They were going to send us home but the supervising physician said she needed to be admitted for more tests.

During one of those tests -- the lumbar puncture -- her oxygen sats dropped and she required supplemental oxygen. That's how they diagnosed the pneumonia. Can you think of a better place to be when your child needs oxygen? I sure can't.

----

I got bit by a cat. A cat that is NOT my favorite. My finger got red and hot and swollen a few hours later, and thanks to a local doc, I started antibiotic for that. I didn't mention I thought I had the start of bronchitis then. I wonder how sick I would have gotten if not for that antibiotic.

----

Thanks to pregnancy complications, a labor and deliver, the whooping cough, and a few specialists appointments, we have met the maximum on our health insurance for 2013. That means we pay just the copays for all those appointments and hospitalizations for this year. If this had all happened one month from now, it would have cost us more than $5000.

----

Back to Natalie...her final diagnosis for those headaches is a "predisposition to migraine type headaches" and the possibility that this illness set off the headaches weeks ago. Considering we were discussing brain tumors, cancer, diabetes, encephalitis, and meningitis, "just an infection" sounds heaven sent.

----

And John. I thought my coughing boy would for sure end up in the hospital. But just as his symptoms started, I was stuck in a hospital room with him and Natalie, so whenever he fussed, he nursed. I had already fought off this infection, so I think he got some super antibodies via breastmilk. Add in the boost of antibiotics and he looked better in just 36 hours. No hospital admission. No scary moments. And he's back to his smiley self already.

----

Now, things are not all sunshine and roses around here. I'm still so sad and exhausted from all this. I do realize how much worse others have it.

I'm really sad Lainie had another seizure, but Thank God she was still on her antiseizure med.

It's hard to watch Jay struggle with this illness now, too. Thank God he was healthy when I needed him to get through the kids' illnesses.

We had to reschedule one Christmas celebration, but now will get some family time at home. And that is always heaven sent.

Haircuts

Lainie has been asking for short hair for months, but I kept putting her off for two reasons. 1, I didn't feel comfortably cutting it that short, and 2, I wanted to make sure she wouldn't have hair salon remorse. So, after months of subtle hints ("Mom, remember that time in August I asked for short hair? I would still like that.") she got her first salon cut. To say she was excited is an understatement.

That same day, Katie decided it was time to cut her hair for another wig. Pantene accepts donations of 8 inches or more, and I think Katie ended up donating 10 inches. She misses her long hair and is worried about making a good bun for her upcoming dance performances, but said it's worth it to help make a wig for someone fighting cancer. And the wonderful ladies at Studio D made her feel fabulous:

Before

All measured

No turning back now

After

The only downside of this whole deal...some kid on the bus told Katie she looked like a fifth grader and there is no way she is in junior high. She blames the haircut. Dang kids anyhow.

Outtakes

Ah, the holiday season. Time to create some clever, attractive, accurate Christmas card that will represent our family for the coming year. No pressure.

Now that the final copy has been ordered and no changes can be made, here are some of my favorite rejected photos for this year's Christmas card:

Platypus face

The Granny Look

Wardrobe malfunction

Boogie time

Pirate face

Seriously. Another picture. Who has time for this.

Halloween 2013

Carving pumpkins

The end result. Mine is puking because that is the scariest thing I could think of.

Trick or treating with daycare...

Taking care of lil' bro

Trick or treating at church, while celebrating the Saint part of All Saints Day

Trick or treating at preschool...

Family trick or treating

 

John as "Si"

My Duck Dynasty Dudes and one photo-bomber

Black Swan

A K-State Veterinarian

Hip Hop Witch

Purple Ballerina

Typical day

It's just a typical Tuesday around here...except that I decided today to write about my comings and goings just so years from now, I'll look back at this and say, "Wow. That's freaking insane." Or maybe it'll make me have a little more compassion for a busy mom some day when my life seems more sane.

Wake up at 5 a.m. to feed the baby.
Fall back asleep and sleep through the alarm clock.
Wake up at 6:52 with an "oh, shit" and jump into action.
Wake up Maggie, Lainie, Natalie, and Katie with a "no dawdling, girls! We slept in!"
Remind Lainie to take her pajamas off before she puts her clothes on.
Ask Natalie to go to the living room until the madness calms, since she doesn't need to be out the door until 9.
Supervise teeth brushing.
Headband for Lainie's hair, comb through for Maggie's mane, quick braid for Katie per her request (sure I have time for a french braid), and pony tail for Natalie.
(Thank goodness John is asleep upstairs.)
Oh, spoke too soon. John's awake.
Make sure girls got their morning medications.
Pour cereal for little girls. Make sure older girls eat an appropriate amount.
Hats. Coats. Backpack. Maggie, get back here! You forgot your planner.
Great day for the bus to be late. Big girls out the door at 7:17.
Now, Natalie finish getting dressed.
John needs a diaper change, outfit change, and mama milk.
Oh, wait. I should probably get out of my pajamas. And makeup. And teeth brushing. Food can wait.
 At least I can sit quietly while I'm feeding John.
...
Break time is over. John playing on the floor.
Change laundry batches.
Clean off kitchen dishes and start the dishwasher.
To the living room to fold while kids play.
Confine John to a walker, then head upstairs and put away clothes for five. (Katie is on her own.)
Pay four medical bills. There goes another $500.
Out the door at 8:45, speech folder in hand.
Call in prescription refills on the way to town.
Natalie to speech at 9.
Get gas in van.
Pay daycare.
Pick up Natalie at 9:30.
Shop for needed infant shirt at ShopKo (no), Gibsons (no), Dollar Store (no). So much for buying this item local.
Pick up prescriptions at pharmacy. Throw down another $100. Repeat this mantra: it's cheaper than an ER visit.
Splurge on a kid sized cone for Natalie for her patience. Thank clerk for giving it to her for free.
Home for lunch. Leftovers. Yum. Not.
John fell asleep on the way home, so lay him down.
Quick nap for Nat and me.
John woke up. My nap shortened to 20 minutes, but still helpful. Natalie is still sleeping.
Lunch for John, then playtime. I have to conscientiously put down the iPad and turn off the TV. Little man rewards me with some killer grins.
Start a painting project for this year's Christmas cards.
Take some snapshots of John for said cards.
More mama milk for John. And a little snack.
More laundry. Fourth batch for today.
Quick...just enough time to clean out the fridge. Another batch into the dishwasher.
Jay's home. Girls are right behind him.
Snack time.
Throw supper in the oven.
Feed little man again.
Listen to Lainie read.
Have a "talking to" with Maggie about a missing assignment. Supervise her completion of it.
Check in on Katie's algebra homework.
Give Natalie permission to play on the computer.
John still in my arms.
All papers signed, completed, and tucked into backpacks.
"Girls, set the table. Feed and water the dog. Change batches. Katie, put away your clothes."
Just enough time to paint with Lainie and Katie. Maggie has to wait until her room is clean.
"Maggie, put away all the clothes on your bed."
Supper time. With fifteen minutes for Lainie to eat before she needs to leave for dance class.
To town to deliver Lainie. Back home to feed John.
Back to town for Natalie's dance class. Stay this time.
Gas in the car.
Home.
Pajamas and mama milk for the baby.
Girls in the bath. "Don't forget to take off your clothes before you get in."
John to bed.
Girls out of the bath.
Bedtime meds.
Brush teeth.
Bedtime books.
Prayers.
Hugs and kisses.
Goodnight!
...
Oh, not bedtime for me yet.
Load and start the dishwasher.
Bag carrots with Jay for the next market.
Pay another bill.
Check emails. Email a teacher. Chat with a friend.
Finish this post...then shower, one DVRd sitcom, then bed.


Just a typical day.

Field trip to the Browndale pumpkin farm

Good ol' farmboy, chewin' on straw

King, er, queen of the mountain, er, hay bales

Selling "eggs"

Corn bin. One was impressed; the other, not so much.

Love those blue eyes

Home days

So, what to we do on sick days?

We scratch a lot. Dang hives anyway.

We practice crawling.

We color Halloween pictures, with Kleenex nearby:

We veg out in front of the TV, with juice, Kleenex, and Violet Sparkles the Little Pony:

We take pictures of sweaters:

"Oh, no! Lainie melted into the floor and only her sweater remains!"

We might be a little slap-happy from too many interrupted nights.

What is your sick-day routine? Besides napping...because that would make too much sense.

Celebrating 10, mall-style

Miss Maggie turned 10! She is still my most gregarious, fun-loving, work-hating, smart, stubborn, determined, single-minded, reading-crazed, colorful child.

In our family, double-digit means you can get your ears pierced. And she was ready!

Before..

During, aka Maggie's "not-going-to-cry" face

After

Friends (and BFF necklaces) make everything better

And maybe a sibling or four

And maybe some orange leaf to top it off.

We were going to have a picnic on top of a big hill, but crazy Kansas snow in October deterred that.

And as far as caring for her ears, she forgot the first day. Then I said something about googling infected ears. I had to leave for work so didn't get back to it, but the next day she told me she had already cleaned them twice by ten a.m. I asked if she wanted to google those infected earlobe pictures, she said, "Don't worry. I did. I'll clean them. I promise." Thanks, google! And all those crazy images!

Party continues today, as every ten-year-old birthday should be a multi-day fest.

Maggie's dinner choice: breakfast supper of waffles, blue scrambled eggs, and bacon.

Our double-digit daughter!

We love you, Maggie!

Mello Jello

Today, this...

and this...

and this...

and this...

and this...

and this...

made this...

much more bearable.