There, I said it

Harper's seizures are back.
There, I said it.
It happened one night about 2 1/2 months ago. I was cutting grapes for the girls' dinner and for some reason, call it motherly instinct, I felt like I needed to look up at Harper. I saw her eyes jerk off to the left and her head bob ever so slightly. It was as subtle a movement as you would ever see, and I wouldn't have seen it if I hadn't been compelled to look, but deep down, I knew it was a seizure. My heart dropped into my stomach.
When Dave got home from work, I tried to play it cool, but within minutes I burst into tears and blurted out what I thought I had seen.
We decided that we couldn't be sure and made a deal not to freak out until we could have it confirmed on an EEG or saw something again. I would make an appointment with the neurologist the next day, we decided, and I tried to put it out of my mind.
The next day, I mentioned it to the nanny and told her to keep an eye out. About noon, she emailed me a video she had taken on her phone and it was even more obvious than the night before that Harper was definitely seizing. I forwarded the video to Dave. He replied with one word, "Fuck."
Yep, he said it.
And I was definitely thinking it.

************

A week later, we are sitting in the neurologist's office.
I am already near tears from the EEG we just endured. Harper *hates* having her head messed with ever since her surgery so attaching the leads for the EEG is like torture to her - lots of tears and screaming and she has to be pinned down.
But, really, I am just feeling utterly defeated to be back in this position again. We made the decision to remove half of her brain in the hopes that we could lick these seizures for good and now, here we are, 6 1/2 months later with no other surgical options. It's like we're back at square one. Except this time, we've already been through hell and back post-op and have come out the other side wiser, but worn down. We know exactly where these seizures could take us and it is a place I thought I would never visit again.

We come up with a treatment plan - we'll try increasing the dosage of her current medications and if that doesn't work in a couple weeks, we will switch to a new medication. I am skeptical. We tried at least 6 medications before surgery, none of which seemed to touch the seizures.
Then the doctor mentions one other thing - our final option - the great white hope - the Ketogenic Diet. We did discuss this before surgery and I remember it sounded like a huge pain in the ass at the time. It's a high fat diet, extreme Atkins if you will, that has improved or eliminated seizures in some children. It involves lots of customized meal preparations and I remember thinking it would be really hard to pull off with toddler twins. And that was before I had a newborn.

"I got the impression before surgery that you weren't sure this diet would help Harper," I say to the doctor.
"No, I always thought Harper would be a good candidate, but we were hoping for a home run with the surgery," he says.

I swallow back tears.

"Well, sometimes, you gotta hit and triple and a single," retorts Dave. "Tell us about the diet."

God, I love my husband.

************

I'm staring at a pile of vomit - tuna and mayo. Harper is screaming. I am trying to remain stoic, but I feel like laughing. It's just that gross and that ridiculous. I ponder the path that has brought me here, back to the Epilepsy Monitoring Unit at Dell Children's Hospital...again.

Poor baby!

It's been about 6 weeks since the seizures resurfaced. We've started a new medication, Depakote. Miraculously, it seems to have helped and I haven't seen a seizure in 5 days. But, we've decided to go ahead with the Ketogenic Diet in the hopes that if it works, we could wean Harper off the medications all together. So, we packed up the toys and books (I'm a pro at packing for the hospital now) and head back to Dell Children's Hospital where we are admitted to initiate the diet under the supervision of a neurologist and dietitian. It is a high fat diet, with almost no fruits and veggies allowed, which is a huge change from what Harper is used to eating. Now, she has to digest a lot of butter, heavy cream, oil and mayo. Understandably, her stomach is not happy. She started vomiting the second day and we are now into day 4 of the diet and she is still not tolerating it well. Suffice to say, I am trying to be patient, but I'm getting tired of having butter thrown up all over me. I want this to work for our family, but how much can I take before Harper and I reach a breaking point?

************

 We've been on the diet for about a month now. I knew it would be labor intensive and time consuming but even my assumptions were a complete under-estimation of the amount of stress it would place on me, and by extension the rest of Twingate Central.

Now, my bedtime is pretty regularly midnight to 1am.
It takes me between one and two hours a night to prepare food and bottles for Harper for the next day.
All her food has to be calculated into a computer program which ensures her caloric intake is appropriate and that her food fits into the 4:1 ratio required by the diet (4 parts fat to 1 part protein and carbohydrate combined).
All food has to be weighed to a tenth of a gram. I've had to buy a lot of different specialty products and supplements to comply with the diet guidelines.
Last week, I went through a quart of heavy cream and four sticks of butter.
All her supplements and anti seizure medications have to be ground into a powder, mixed with water and liquid stevia and given to her orally because she can't have the sugar present in standard liquid medications. Preparing the meds and supplements (she has six total) takes me about 30 minutes twice a day.
Oh yeah, and I have another toddler and a newborn who still doesn't sleep through the night.

This is freaking ridiculous.
There I said it.
 But, I won't stop.
That's right, you heard me.

We're seizure free again and it's worth every minute of lost sleep.

Harper has a gait trainer now which she stands in daily and we hope she will soon be using it to move around. She scoots around on her butt assisted by her right arm and leg. She's using her iPad to communicate choices and answer yes and no to basic questions. She's thriving. If she can keep up this pace, so can I.

Plus, there's this little dude who keeps me smiling.

Poor guy - everything he uses is pink!

Mr. Walter

And, of course my other sweet girl is doing wonderfully and is a joy.

Pool party!

Silly kiddo.

So, despite some set backs, there are many bright spots.
Keep 'em coming, Universe! That's what's keepin' me going.
Don't think I needed to say that, but, there, I did anyway...