Thursday, April 19, 2018

PLEASE DON'T FEED THE BEAR!

 
 
About an hour from us is a wonderful zoo! When you enter the zoo you have the option of buying a cupful of food that you can feed to the different animals. We love the up close and personal that feeding the animals gives you. It takes a lot of bravery to hold food out in your flattened hand for a giraffe to eat!
 
The food is specially designed and healthy for the animals to eat.
 
They love it so much that sometimes they bypass your hand and just go for the cup.
 
It's a fun, lively experience that we love doing with our children.
 
But don't feed the bears.
 
 
 
Nope. They are behind the glass enclosure and you can only look.
 
 
 
We have a bear in our house.
 
An adorable little bear who cannot be fed - no matter what she tells you.
 
 
I don't care if she walks up to you with her adorable little hand out and begs for the snack you are munching on...
 
Please, please, please... don't feed our bear.
 
We are deep in her diet and it has been unbelievably good.
 
Before we started the diet, little girl was having up to 150 head slamming seizures a day and 50 or more smaller seizures that we weren't even counting on our counter.
 
Four weeks into the diet and she is no longer slamming to the floor.
 
Did you read that??
 
That awful pink helmet with the face guard to protect her sweet little face is now sitting quietly on our dining room table. Her last head slamming seizure was the day we left the hospital but we were too shocked and nervous to even say anything.  I mean - seriously??? One day she is slamming to the floor in front of the nurses station scaring them all silly over and over again, and the next day she is running up and down the hospital hallway without falling one time.
 
It's been a crazy breath-holding bunch of weeks watching her and marveling at the change. As the seizures have eased, our little girl has been waking up mentally. Two months ago she couldn't focus for more than 30 seconds at a time. Now she is building puzzles, looking at books, coloring, playing happily with the boys and babbling up a storm.
 
She still is having seizures. We are not completely out of the woods. But her seizures are smaller and though no-less concerning, a lot less dangerous.
 
What made the difference?
 
Three factors.
 
About 8 weeks ago we started her on CBD oil.
 
About 7 weeks ago we started her on a modified Ketogenic diet and then 3 weeks later started the full Ketogenic at the hospital.
 
Ever since we have known about our little girl and her epilepsy we have been praying.
 
Prayer. Diet. CBD.
 
It's not important which one is working.
 
What matters is that our little girl/bear is coming out of a terrible time and we are committed to keeping her that way.
 
The diet is HARD.
 
We spend an average of 90 minutes a day prepping and stressing over her food.
 
Every single morsel that goes in her mouth has to be weighed. She has STRICT menus that we have to follow. We have a dietician who has to approve any changes or additions to her menus.
 
 
 
It's a ridiculously unhealthy diet.
 
I mean seriously... the amount of fat she is eating each day is absurd.
 
Would you like a bit of Keto bread with your butter???
 
 
Who spoons oil into their child's mouth as part of their dinner??
 
Who cuts a half a strawberry into tiny thin slivers to make it look like she is getting a lot of strawberries?
 
Who mixes nuts in a bowl and adds a tablespoon of butter chunks and calls it cereal?
 
Who mixes mayonnaise and ranch dressing together and serves the mixture as a side dish?
 
We call it the mayonnaise diet for good reason.
 
Thankfully, she LOVES the fats. She eats the butter chunks whole. She willingly drinks the oil. She loves her mayo-ranch side dish.
 
It's our saving grace!
 
But it's hard.
 
She loves the fats but she also wants what we are eating.
 
It is mentally hard on us as we try to find ways to keep her from grieving the foods she cannot have.
 
When the boys get their big bowl of fruit for dessert with a small squirt of sweet whipped cream on top... she gets a massive bowl of unsweetened heavy whipped cream with a two tiny slivers of strawberry on top.
 
When we have our thick, juicy, pizza, she gets 12 pieces of pepperoni with a tiny drop of pizza sauce and a tiny bit of shredded cheese.
 
For Easter she got her 95% cocoa bar which she can eat (in tiny portions) with heavy whipping cream and the boys got one chocolate bar each. The rest of their baskets had small toys, books and audios in them.
 
We try to match what she is eating with what we are eating.
 
We are mindful and careful and vigilant but that doesn't mean there aren't periods of tears and sorrow. Hamburgers and French fries meals are sad affairs when French fries aren't sitting on her plate.
 
She doesn't understand the diet.
 
But she feels a thousand times better.
 
So even though she can't put it into words - we are fairly certain that she understands enough to know that what we are doing is good for her.
 
She isn't going hungry.
 
For those worried about our bear and whether she is going to starve on this diet - never fear - she gets 5 meals a day. Three full meals and 2 snacks. The amount of calories she consumed before the diet are exactly the same as the amount of calories she gets now. She has not lost weight and even though she is eating an exorbitant amount of fat each day, she is not gaining weight.
 
To balance out the unhealthy parts of the diet... she gets to consume a bucketful of pills each day. Everything that the diet lacks is covered in that bucket.
 
We can't cheat on this diet.
 
Not one tiny cheat.
 
We can't let her have a single goldfish cracker. Or a bit of candy. Or a cookie.
 
Any of those foods and a thousand more could throw her out of ketosis. Right now her body is burning fat instead of carbs. This is GOOD. This is the purpose of the diet. They don't understand why burning fat helps with seizure control but it does. If she gets an uncalculated carb she could be thrown out of ketosis and have worse seizures than before. We have been warned. Over and over and over again. 
 
We are vigilant. Everyone in the family is well aware of what we are doing. We have rearranged our entire kitchen for this diet. Her food is separate from ours. We work hard not to leave food out on the counter that would tempt little girl. We are careful. But out in public - where people don't understand - it is going to be so much harder.
 
Food is a way to show love. It's something we often share naturally.
 
But not for her.
 
You can't feed her.
 
No matter how cute or desperate she seems.
 
If she is with you in school or drama or church or wherever... please, don't feed her.
 
Please, please - don't feed our bear.
 
 
 
 
 
 
 

11 comments:

  1. Exciting to read how well this way of eating is working for your daughter. Continuing to pray for your daughter and your family.

    God bless

    Erika

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  2. Oh Julia...I can't imagine how hard and stressful this must be. But also I can't help just weeping when I think about how much God loves this little girls and how He knew every one of her days before a single one came to be. If she had stayed in an orphanage...or even perhaps if another family had brought her home...she would not be experiencing this healing and freedom. So thankful.

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  3. So thankful that Mary Sasha's diet is working so well, and that she likes the allowable foods. Just wish it were not so hard to have to tell her "No" for all the rest, especially when she's too young to understand the necessity...

    One idea, which may or may not work or be feasible: would adding food coloring to the whipped cream make it a little more exciting for her? Especially if she could color it herself?? (I have no idea if food coloring is okay or not).

    Mary looks so vibrantly alert and happy - and there's a resemblance to Aaron in the first one here! Funny how these things occur...osmosis??

    Best wishes to you all,
    Susan in Kentucky

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  4. The fact that something is finally working for her brought a tear to my eye!! I am so happy to read this and so grateful for your diligence. Keto is hard (not necessarily unhealthy as stated, some research has shown that it helps reverse certain heart disease) but good fats (yum avocado!) are GOOD for you anyway! Just finding that balance and being so regimented is hard. We've been misinformed about fat, to be honest, so don't feel so hard on yourselves. We are a culture addicted to sugar and carbs, but for some of us (myself included) taking that out of our diet saves our lives! I am soooo happy that this is working for precious little sister. She deserves freedom to play and run and be a little girl. I really hope it continues to trend in the right direction for her and that you are able to find fun keto recipes that will delight her that her dietician can approve based on her macros. xoxo You guys are doing amazing!

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  5. Thank you for this amazing explanation. I’m rejoicing in the improvements with Mary’s seizures. I’ll keep praying for success, your stamina, lots of angels guarding Mary and every speck that enters her mouth, peace and contentment for Mary and continued healing. Much love friend, kelly

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  6. I've been lurking on your blog for quite a while, just wanted to comment to say I'm so glad the diet is starting to show improvements for your little girl

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  7. I am praying for you! Though I know about having an 11 year old child with food intolerances (gluten, egg anc other things), it is hard for me to wrap my mind around the strict diet you are following. How wonderful that you’ve seen so many positive steps forward! I know God will be there to guide you and Mary as you move out into the world and have to face this with others and offer explanation after explanation. You are such an inspiration! Mary’s face looks changed—relaxed and happy.

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  8. WAY TO GO! I am not sure if she can have a small amount of bread crumbs but I just made homemade avacado “fries.” (Wedges of avacado, dipped in a tiny amount of breadcrumbs and then baked at 400 degrees for 15ish minutes. Crunchy on the outside, creamy on the inside. Great for dipping. Maybe her nutritionist could come up with something like that to fit her diet.

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  9. Julia and family,

    Aaron's adoption was the first international adoption I ever followed and I kept up with your family for ages.
    I haven't been blogging or reading blogs for a few years now (just far too busy)... I checked in here today, and find out all about your precious little daughter. She is too beautiful for words!!!
    I'm so happy this diet seems to be helping!
    I will be checking in more often now, and praying for you all.

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  10. Children who are on the keto diet for refractory epilepsy would qualify for a Wish through MakeAWish, and parents can self refer (just put “refractory epilepsy on ketogenic diet” in the diagnosis section). Not all wishes are trips or evtravagant days with lots of attention which I understand may not be right for your family right now, but I’ve seen some families do an adaptive playscape for the child and their siblings, or an adaptive bike (or wait a bit and see if a family trip will work in a few years if that’s your choice). Many parents of severely epileptic kids don’t think MakeAWish is for them, and it is!

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