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!