The Hassle of Keto

Monday, I offered my assessment of the financial cost of the ketogenic diet. Today, I want to explore a much bigger consideration: the hassle.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

It's important to note where I'm coming from here. Collin uses a g-tube to eat, so palatability is not a huge issue for us. His diet is blended from whole foods and is dairy free, grain free, and soy free.

So, let's start off by calling it like it is: the ketogenic diet isn't easy. Here's why.

1. The food. Every meal and every snack on the ketogenic diet has to be precisely calculated and then precisely measured. There is very, very little leeway.

2. The time. All food takes time to prepare, I get that. But the calculating and the measuring involved in this diet really adds up. Then there's the matter of time windows. Meals need to be completed within a certain amount of time so that the body metabolizes the food in its proper ratio. Meals and snacks also need to be spread out over a proper amount of time to keep blood ketones level.

3. The complications. Various blood and urine levels have to be checked regularly to make sure the diet isn't having any adverse effects. You need special IV fluids when you're in the hospital. Managing illness on the ketogenic diet is one of the more complex things I've ever tackled. The list goes on.

4. The lack of flexibility. For us, there is no Hey, let's change our plans and stay out longer. If Collin's food isn't with us, we have to go home. Twice in his entire life, we have extended a trip, and then only because I had packed a gram scale and so could cobble something together without a Vitamix. 

But. But. But. 

The hassle is 100% worth it. And it's our normal. We rarely think about the hassle and, when we do, we realize that we have the far better side of this tradeoff. 

Ode to the G-Tube

Our good friends recently made the very tough decision to get a g-tube for their daughter, who is a little younger than Collin. The surgery happened this week and the recovery has been rougher than expected. Everyone in the family is getting used to a very new way of doing things.

On the day of our little friend's surgery, I sent her mom a picture of Collin the day he got his g-tube. He is three weeks old. His face is puffy from IV fluids and he's pale from the anesthesia. You can't see it in the picture, but under all of those pastel swaddling blankets there is a flexible yellowish eight inch long tube sewn into his stomach. 

I was terrified and heartbroken when I found out that Collin needed a feeding tube. It seemed like the end of something precious.

I couldn't know then that a time would come when I wouldn't give that g-tube a second thought except to find it cute. And I certainly couldn't know how many other hard things would be made easier through that one scary little hole.

Because now, I don't have to stress over the pace of Collin's feeding therapy progress. I know that every day he will get the ideal number of calories from whole foods and more than enough water to keep him well hydrated.

I don't have to worry about force feeding Collin a ketogenic diet. I know that at every meal he will get the exact ratio of fat to protein and carbohydrate he needs to control his seizures.

I don't have to worry about how to get Collin to take medicine when he is sick. I know that he gets the full dose of whatever medicine I give him.

My son is with me because of his g-tube. It allows him strength and health. With a g-tube, he can be safe and free.

Good News Friday

Can I get an amen?

Can I get an amen?

Phew. I think extra good news is in order this week, don't you?

I'm loving the Black Friday pushback trend. I especially enjoy the idea of making state parks and other outdoor areas free on Black Friday. That's a deal and a half.

Besides offering all sorts of practical help, the people of Bute, Scotland are welcoming Syrian refugees with a free screening of It's a Wonderful Life. I can't wrap my mind around all of the ways that is amazing.

This 16 year-old guy has invented a device to allow people with certain disabilities to speak using breath patterns. It is light, user friendly, extremely affordable, and it actually works: a virtually unheard of combination for adaptive equipment.

Preorders for my first book shipped this week! My sister and I are really pleased with the final product and we're getting lots of good feedback from people who have received their copies.

This restaurant owner is offering free dinner to anyone who will be spending Thanksgiving Day alone.

I LOVE this list of hilarious Thanksgiving food requests. "Butt rolls"!

Here's Collin's number one favorite thing right now. Simultaneously freaky and amazing. Pay no attention to the drug references.

And if you're still feeling down, all you have to do is watch this video of Baby Collin talking and laughing. My work here is done.

This Rare Day

This morning, we turned off Collin's sleep machines and pulled him out of bed earlier than normal. He had an 8:00 clinic appointment, an exception to our no-appointments-on-Friday rule. Kyle carried his lean little pajamaed body to the bathroom; his hair stood up in a dark fuzzy poof except for the indentation from his BiPAP mask across the top of his head.

On the way into the city, we listened to NPR and some classical music while Kyle gave Collin his breakfast via syringe through a feeding tube in his stomach. Beef, strawberries, pineapple, three oils, and a handful of supplements created an orangish puree precisely mixed to fight seizures.

At one point in clinic, eight therapists and medical representatives observed Collin. At another, two doctors quizzed me at the same time while another worked with Collin and spoke with Kyle. We left with orders for x-rays, three follow-up appointments, two wheelchair modifications, and a knee immobilizing brace.

Once we got settled at home and sent Kyle off to work, I put on Collin's two-piece orthotic braces and manhandled him into his stander. He played his keyboard (All the rockstars play keyboards standing up, I told him) while I did some prep for the Valentine we were planning for his cousins. Collin pushed the tissue paper onto the glue (helpful) and scattered paper hearts on the floor (not helpful) while his favorite Pandora opera station played in the background. 

At nap time, I pulled his oxygen tank out of the closet, turned the dial to 1/4, tested the cannula on my lip, and fit the tips in Collin's nostrils. I turned him on his side and he stopped wiggling when I nestled his Cookie Monster between his arms. After double-checking the video monitor to make sure I could see his face, I whispered into his smiling cheek and tiptoed out to my writing desk.

In the afternoon, Collin kept me company in the kitchen while I baked muffins and we listened to an audiobook. I helped him practice eating pureed prunes by mouth. We read a book about lemonade in winter. I hung him upside down on the inversion table to slow his scoliosis and made sure he spent some time prone on the floor to stretch his lower abdominal muscles and hopefully encourage some pushing with his arms or movement of his body.

After dinner, we loaded the wheelchair in the back of the van and headed to the grocery to buy supplies for Valentine and Birthday weekend. Collin loved the colorful produce department and the whole fish sitting in baskets of ice at his eye level, but the noise and lights got to be too much for him, so we hustled home.

Then at bedtime, after the blood glucose and ketone check but before the growth hormone shot, we all crawled in Collin's twin bed and read out of our three regular books: Just the Way I Am: God's Good Design in Disability, Farts Around the World, and a book of Billy Collins poetry (currently Picnic, Lighting).

Just another day living alongside rare disease and disability. It's our normal.

This wasn't the life I expected and it hasn't been easy getting used to it. But it's mine and I'm living it as fully as I can, one day at a time.