Transformation

Three months on hard, mind-altering drugs made for difficult relations in this family.

 

How can you even consider playing with someone who acts like a hostile drunk?

 

 

Four weeks off hard, mind-altering drugs makes for a much more pleasant little sister.

 

It means her brothers actually want to play with her.

It's only been in the last few days that they have realized that she's not going to bite their heads off and is rather a fun companion.

 

The sounds of laughter and seeing the three littles truly enjoying each other has been a pleasant gift these last few days.

 

We are loving the transformation.

 

Laughter is good medicine!

 

 

 

Ketosis!

Three weeks ago we made the decision to put Mary on the Ketogenic diet. It's a medical diet and needs to be monitored carefully.  To do the full Keto diet a child needs to be admitted to the hospital.

 

 

 

We knew this and did not try to start her on the diet but we did test foods with her over the past few weeks. We discovered that our little girl LOVES all the fats required. She is a lover of mayonnaise and sour cream and ranch dressing. She LOVES drinking the heavy cream!

 

So over the last few weeks we have been giving her the fats and cutting her carbs.

 

When we arrived at the hospital... within a day at the hospital little girl was in mild ketosis. By Wednesday she was in full ketosis.

 

WOO HOO!!

 

She gets the reward for getting into full ketosis the fastest!! 

 

They have never had a child who loves mayonnaise as much as she does.

 

Her blood levels have been excellent and she is tolerating the full diet well.

 

 

That means that we get to go home today!!!

 

WOO HOO!!!

 

It has not been a bad experience this time around. Little girl has been amazing and yesterday the little boys had off from school because of snow, so they spent the day hanging out at the hospital.

 

 

But sleeping at the hospital isn't the easiest (for me) and little girl and I really really want to go home!!

 

 

I won't lie. This diet is hard. Even though she loves the fats on the diet - she is not a fan of the limited choices she is being given. No matter how much you dress up what is on her plate - the reality for her is that she can't eat her favorite foods. And the harder reality is that she has to see us eating foods she cannot eat.

 

On Wednesdays, volunteers provide free lunch for the families on this floor. It is a HUGE blessing because buying food at the cafeteria is expensive and having both boys here yesterday was going to cost us a pretty penny.  So I took the boys down and filled up a tray full of sandwiches and chips and cookies. It broke my heart knowing I could not give the same food to my little one. While she dipped her chicken and beans in mayonnaise with little gusto (she loved the mayo but was not a fan of the chicken and beans), they chowed down on sandwiches and chips and cookies. She cried. Rob and I wanted to cry with her.

 

It's not realistic to shield her. They need to eat. They can't hide their food from her and we don't want to feed her separately from the family. We will absolutely do our best when we are at home to make her choices of food as enticing as we can. But she can't eat many of the same foods as the rest of the family. It's a cross she will have to bear. It hurts our hearts to deny her food.

 

But seizure free is our goal. And this plus the CBD oil is our best hope.

 

It isn't going to be easy but we are committed.

 

 

We are heading home and gearing up for the long haul.

 

We have been told that we may not see any results from the diet for at least 3 months and to expect to be on it for 2 years.

 

The long haul!!

 

Step one is over.

 

Ketosis.

 

Thank you, Jesus!

 

Testing and Measuring

Little girl and Mama are hanging out at the hospital this week.  Papa's coming when he can.

 

 

Melatonin mellowed her out last night after a busy busy day of admission and blood work and seeing lots of people in and out of the room and a crazy meal that included a LOT of cream cheese spread on roast beef.

 

We were granted a PRIVATE room which is a total blessing. Being stuck at the hospital all week is hard enough without having to share a room.

 

Why oh why do they make hospital rooms with so many LIGHTS in them? Between being woken up to get her poor little fingers poked, we struggled to sleep in our brightly lit room. There are lights on all the monitors and machines around the room and with the light pouring in from the hallway - we might as well have not even turned the lights off.

 

So Papa was commissioned to bring duct tape and a towel so we can block the light coming in from the hall.

 

Despite sleeping rather pitifully last night, little girl woke up with a smile on her face.

 

This is a totally different hospitalization from last time. Two months ago her drug-induced raging sent everyone running from our room. This time I am having a hard time keeping the staff from wanting to take her home! It's been a challenge to keep well-meaning people from picking her up. She has no sense of danger and will just willingly go with anyone.

 

It's a week of training and testing. Testing for Mary - which means lots of blood draws and finger pokes and urine tests to make sure her body is handling the diet well. Testing foods - what she likes and doesn't like. What works and what doesn't. For us - training. Each meal requires exact measuring. Every meal has been proportioned out and we have to make sure to measure exact proportions. It's a bit daunting. There is no guess work and absolutely no deviation. If we want to add a meal we have to submit it to the dietician for approval. We have to learn how to do the finger pokes and urine tests. Did I say we have to measure everything to the nth degree?

 

She's doing well. She hasn't liked all the foods but she's been pretty good about eating what we stick in her mouth.The finger pokes are upsetting - especially in the middle of the night. But she's starting to get used to them. Thankfully, we won't have to continue the nightly pokes when we get home.

 

And the best part for her is that she doesn't have to be contained in the room. So we can freely run up and down the halls, singing and shouting. She can play in the toy room. She can wander around our room looking for trouble. All those machines that are in here... they have lots of tempting buttons to push!!

 

It's the beginning for us of a two year process. I won't lie. Measuring every single gram of every single piece of food that goes into her mouth for the next two years feels a bit overwhelming right now. But if it means seizure relief then we are all in.

 

Thank you to so many of you who have sent words of encouragement and prayers. We appreciate each one. Knowing we have people praying us through this week and beyond makes it easier to endure!!

 

Choices and Changes

Two months ago we were in a very dark place with little girl. Seizure medication had taken her captive. She couldn't focus. She was violent. She was miserable.

 

Her seizures were well over a hundred a day.

 

We were despairing on so many levels.

 

Seizure medicine isn't something you can just start and stop willy nilly. It's a slow process to start the drugs and an even slower process to wean off the drugs.

 

We gave little girl her last dose two weeks ago.

 

We despaired two months ago. We wondered if the sweet child we brought out of the orphanage would ever come back. It was a dark dark time.

 

She's back.

 

 

She's back to her ornery, little, cute, happy, get into trouble, seven year old, toddler-self.

 

She wakes up smiling and loves life.

 

She's not perfect. She wasn't perfect before. But her brain is no longer being fried by drugs that did nothing except mess her completely up.

 

Thank you, Jesus!

 

 

 

When your child has as many seizures a day as little girl and everything being tried is not working, you come to a point where you have to think outside the box.

 

Trying another round of drugs just made us want to vomit.

 

We came to the hard conclusion that conventional medicines are not going to help little girl's seizures.

 

Almost three weeks ago we started her on CBD oil.

 

Then, with our first doctor's blessing, we transferred to a new doctor who will be overseeing Mary on the Ketogenic diet.

 

Big choices and changes.

 

The CBD is easy. We give her two doses a day and just have to time the doses so that she isn't getting them within two hours of her other meds. She is still on one seizure medicine and we have to be careful that the CBD oil isn't interacting with that medicine.

 

The diet... not so easy.

 

It's a huge deal.

 

I fly to Texas tomorrow for the Great Homeschool Convention in Fort Worth. I come home on Sunday afternoon and on Monday Mary will be admitted to the hospital and will start the diet. She will be in the hospital for 4-5 days.

 

We are doing the Classic Ketogenic diet. Severe epilepsy means no shortcuts for little girl. There are modified diets out there that would be easier to do but after much discussion we made the choice to go all in.

 

We have spent the last few weeks getting ready for this big change.

 

Little girl has been slowly switching from a mostly carb diet to a mostly fat diet. I call it the mayonnaise diet. It's a very strict diet that involves weighing foods and counting carbs, proteins and fats. She will be on a 4:1 ratio. For every one gram of carb (protein and carb combined) she has to eat 4 grams of fat. Most fruits, potatoes, rice, pasta, sugars and more are all too high in carbs to be allowed.

 

For the most part she hasn't minded it. We are working hard at putting food on her plate that she enjoys. And we are easing her into it slowly.

 

It's harder on us. It hurts our hearts to have to deny her foods that she absolutely loves. It hurts to know that in a few short days - the foods that her brothers get to eat will be off limits to her. We aren't putting our entire family on the diet. It's not realistic. We will be removing some foods and making changes in how we eat as a family. We will be rearranging our kitchen and pantry to get foods out of reach. We will be working hard to find alternative foods for her to eat. We've bought recipe books and are experimenting with this and that.

 

It would be a bit easier if she could communicate and we could explain to her why we are doing all of this. Right now she is too new to the English language, has lost too much of her native language and honestly is too emotionally little to explain it even if we didn't have the language barrier.  She will just have to trust us. And we will have to work hard to find ways to make this diet as appealing as we can.

 

CBD and diet are not quick fixes.

 

We've heard the miracle stories where someone starts CBD and in a matter of days they are seizure-free. We've heard the same stories for the diet. Those are miracle stories. Almost three weeks on CBD and two weeks on a modified Ketogenic diet and little girl's seizure level is still ridiculously high.

 

We've been told to expect to be on the diet for three months before seeing any results.

 

We've been told it takes weeks and months for CBD to build up in the system.

 

We are in for the long haul.

 

But it's okay.

 

 

 

Our funny, naughty, into everything, singing, laughing little girl is worth the long haul.

 

 

 

Happy Birthday Mary Sasha

Seven today!

 

 

 

 

Happy Birthday sweet girl!!

 

 

The prettiest girl in the house!

 

 

Her favorite favorite movie in the entire world!!

 

 

Let it go!!

 

Happy Birthday, Mary Sasha!!