What Waiting Looks Like

Garreth got kicked and pinned in the ribs yesterday. I got smacked in the face, a fairly regular occurance. Liam took it in the leg and Aidan’s finger was bitten until it bled.

Family snuggle time in this house has its recreational hazards when seizures are involved.

Aidan’s seizures are changing again. He drops his head now frequently when he drives, taking away his greatest skill. He tremors and stares quite a bit making meal time another long arduous task.

And after his tough tonic seizures like the one that happened at snuggle time, his face turns red, his breathing is jagged and then he cries as he comes to.

And now we’re playing the waiting game.

Aidan finally received his certification to legally use cannabis to treat his seizures. We’re very excited and hopeful and ready and maybe a little desperate.

But now we have to wait.

Wait for the right plant to grow.

Wait to soak it in vodka, the good stuff, to actually turn it into medicine.

Wait to have that tested and properly dosed.

But mostly we have to wait for Aidan’s spine surgery to be done.  We’d be breaking federal law by crossing state lines with his medicine. I’m not actually claiming any sort of moral high ground in the waiting because it’s a pretty dastardly deed to just stand by and watch my son make himself bleed.

This waiting feels like wasted time, where my kisses are powerless and my words, I’m promise I’m fighting this with you, meaningless.

But we will wait, together, and hope and snuggle more, because that’s what we do.

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This Big Fat Face of Epilepsy

This is the Big Fat Face of Epilepsy in our house right now:

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Yes, that’s a tiny bit of beef and broccoli with a slab of butter and a side of whipped cream. It’s nothing but a whole lot of fat and just a few carbs and protein. That’s Aidan’s dinner. He can have no more, no less.

And this is four days worth of snacks.

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They’re hazelnut chocolate cookies, sort of. They took me an hour to make because I had to measure every ingredient carefully down to the gram and it’s a new recipe to me. I’ll make another batch in another four days. Perhaps it won’t take so long the next time I bake.

Aidan is adjusting well to the ketogenic diet. All of the fancy numbers we’re keeping track of look good.

We’re measuring every gram of food, scraping bowls, putting numbers into a calculator to  come up with appropriate and hopefully tasty meals, capturing drops of pee.

It’s labor intensive as I’m at the beginning of my learning curve for this diet. We’re starting the Marathon on Heartbreak Hill. I’m taking my weary, discouraged self and gathering every bit of strength and muscle and oxygen and guts and pressing on.

At the crest of the hill it’ll all get easier. I’ll know how to cook. Measuring won’t seem like such a big deal. There will be options on Aidan’s menu.

The big question remains – will it help? Will these damn seizures leave my boy? I can’t even consider that right now as hope feels so elusive at the moment but it’s the one thing making me put one foot in front of the other.

Here’s another Face of Epilepsy in this house:

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They took 15 minutes to make because I know the recipe by heart and these will be gone shortly. There’s also the six hours of Grey’s Anatomy I binged on yesterday and the PJs I’ve been in for days.

And here is the most precious Face of Epilepsy in this house, the reason I fight, and cook, and measure, and research, and hope:

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Will you join us for Purple Day this Wednesday, March 26? Wear purple. Tell people what you know about Epilepsy. Check out the Epilepsy tab on the top of the page to come up with an elevator speech.

Post a picture of yourself on FaceBook wearing Purple. Email me a photo of you in Purple.

Stand with us as we fight for seizure freedom.

Ketogenic Birthday

Aidan is turning thirteen this week and he can’t have birthday cake.

As I mentioned yesterday, I will be eating cupcakes because I’m having a tiny pity party.

But no cake for Aidan because we have to start to starve him, sort of.

At this time last year Aidan was in the hospital having hip surgery while our house was under major construction. This was a big deal, to put it lightly. It was a huge recovery and  spending time in the hospital was intense.

Happy Birthday Aidan, you get another hospital visit for your birthday month, and no cake and no birthday cereal.

In our unrelenting fight for seizure control we’ve decided to put Aidan on the Ketogenic diet. When you hear “diet” think “medicine” instead of “weight loss.”

Here’s the skinny – when your body burns fat it leaves traces of ketones in your system that have been proven to alleviate seizures in some kids. So the trick is to get the body to burn fat. In order to do that you need to get rid of the sugar, which of course shows itself most readily in the form of carbohydrates. This little Irishman will be saying goodbye to potatoes, rice, cereal, oatmeal etc. Since we don’t actually want him to burn his body fat (which he doesn’t really have anyway) he will be eating fat with a tad of protein. This diet mimics starvation. Doesn’t that sound like fun? His urine will be tested everyday to make sure we strike the right balance.

Everything Aidan eats will have to be measured and will most likely have a generous coating of healthy oil or butter. It will be a huge learning curve for us as parents, will require effective communication with school, and will be rather time intensive in the beginning. This diet isn’t nutritionally balanced and isn’t what you’d think of for using food as medicine. This isn’t chicken soup for a cold or ginger for nausea. We’ll have to watch him closely for side effects and supplement with very specific vitamins.

Oh yeah, and the hospital stay. He has to start the diet in the hospital because it’s not without risk. They need to monitor him closely, test certain blood levels, make sure he tolerates the diet, and give us lessons on how to administer it.

Sounds overwhelming, doesn’t it? Well yes then, I’m overwhelmed but I’m reallynotfreakingoutallbecauseI’mtotallyreadyandnotfreakingoutatall. The thing is, we’re choosing this. We need to beat this seizure monster and none of his medications have worked and they all come with risks as well.

So yes it’s my choice to bring my son to the hospital during his birthday. But really, what a dreadful choice to have to make.

I’ve done my reading. I’ve been in constant contact with the medical team. I joined a Facebook group to outsource some questions and compare answers, because really, how did Medical Moms survive before Facebook? I’ve been emailing some other Keto Moms with questions (Thank-you SO MUCH Michelle and Nancy and consider yourselves on alert for awhile!)

I’m ready, but still….will it work? Will I know? Will it be worth it?

Garreth and I approach medical issues so differently. He believes a trip to the hospital is an adventure, one he can’t go on because of his work schedule. Garreth is never the optimist but here he is encouraging me that at least it’s not surgery, at least it’ll be a short hospital stay. When we got the hospital date I begged Garreth to freak out with me or have some sort of over-reaction. He is my cool as a cucumber guy who said we’re prepared for this and we chose this and knew it was coming. Whatever.

Even the best of hospital stays tests a marriage. But really, who uses phrases like “best of hospital stays?”

Here I am knowing that I’ll be “sleeping” on a cot which will make me grumpy and wondering when I’ll be able to eat that hospital food since I can’t eat in front of Aidan. Aidan won’t be sick but he’ll be sick of me and we’ll be bored out of our ever lovin’ minds. And I’m the optimist. The one who sees unicorns.

The nurse today said the best case scenario is that we’ll be out in three days. I got so excited feeling like I could muscle through that. Then I remembered – Aidan has never been a best case scenario kid. Just take the g-tube out and the hole will close at home. Nope. His required surgery to close. Maybe if we patch his eye they’ll straighten out. Nope. Surgery again. He should recover from hip surgery in 3-5 days. Yeah, not quite. Maybe this genetic test will give us some answers. Really? This is the Big Daddy of seizure meds and should work for him. Um no, no, and triple no.

But I’m bring Aidan’s superhero cape and birthday hat. We’ll go unicorn watching together and maybe he’ll get his best case scenario this time, seizure freedom and all.

Aidan turns thirteen in a few days. I’ll be eating cupcakes in a closet but a birthday boy deserves a treat. Yummy, fatty cheesecake it is then.

Because someone somewhere is pulling for us and saying, “Let them eat cake!”