Monday, December 30, 2013

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.

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.

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.

Monday, December 23, 2013

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.

Thursday, December 5, 2013


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:


All measured
No turning back now

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.


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.