I am now a MAD mom

Many friends joined us in praying during Evie's last inpatient stay at Children's Hospital in Denver (Aurora) since it didn't go as we expected. So, here's a brief overview of what happened.

We've been trying to figure out Evie's seizures for two years now.

A while back, we had a spinal tap done that showed that Evie is "probable" for a certain metabolic disorder where her brain can't process sugar as fuel. Her seizures may be the result of her brain not getting fed. The idea of this diet was then put on the table as a way to properly fuel her body and brain with fat instead of sugar.

Kids who haven't been able to have their seizures successfully controlled with medicines usually see better results with changing to a Ketogenic Diet.

I guess I think of it this way... the rest of us can function properly on unleaded. Our sweet girl requires premium. ;)

So, we decided to give it a shot.

The view from our room

She fasted the night before we got there and drank a special shake during the first day.

We took lots of wagon rides and trips to the library and toy rooms.

We even had some special visitors!

The general idea is to starve the body to get it into a state of ketosis. This happens when the body starts using fat for fuel instead of the sugars we eat.

From WedMd:

Ketosis is a normal metabolic process, something your body does to keep working. When it doesn't have enough carbohydrates from food for your cells to burn for energy, it burns fat instead. As part of this process, it makes ketones.

We can monitor that she is still in ketosis by checking to see how many ketones she *expels* during the day. (I'll let your mind figure out how we'd test for that) ;)

The diet works on a ratio high in fat, moderate/low in protein and carbs. On the second day, I was taught how to use a special computer program to figure out the ratios. I then measured her foods to the exact grams or ounces on a scale. Her calories needed to be strictly limited, too, to maintain the state of ketosis. 

Her breakfast on the Ketogenic diet.

Unfortunately, she did not handle this diet well at all. 

The main staple of this diet is heavy cream. It's carb free and high in fat. But, we quickly found that her body aggressively rejects raw cream. (I can cook with it, but if it is mixed into anything cold - like using it to make creamsicles - her body expels it as quickly as possible.)

Our poor girl spent the next four days being so sick and out of it. 

I'll spare you all the details, but it was horrible. She wasn't herself. She refused to eat, drink, walk, etc. She was a sad, sometimes angry, limp noodle. She wouldn't even talk. She just cried, grunted, screamed. 

It was horrible. 

Dear Doc McStuffins, THANK YOU!

(why is it that kids look so much smaller when they are in those big hospital beds?)

So, the team decided to switch her to a Modified Atkins diet to see if that would help. 

The first smile I'd seen in 4 days... talking to her daddy. 

She would continue to have very limited carbs, but she'd be able to eat as much fat and protein as she wants and there would not be such an emphasis on the cream.

THIS GIRL. What a sweetie. She was so content and awesome so that I could focus on her sister.

Just about the time she started to rally, John was able to come up to be with us. By that point, I was was EXHAUSTED. I'm so grateful he came. 

Seeing him in real life (vs. talking the phone or video chatting) gave her the boost she needed to get well enough to be discharged from the hospital. 

We've been home for about a week and a half and she's doing really well! She was seizure free for a week and her seizures have been minimal the last few days. 

There is a lot of trial and error with this diet. We are learning and making adjustments as we go.

But, let me say this: ANY reduction in the frequency of her seizures is a WIN in our book. Her eyes are so bright and her sentence structure is already improving. She seems so much clearer. The fact that we saw a drastic reduction in seizures but then saw a few is not as discouraging as it sounds. She was having probably 100s per day and now we see 5 or less. So, yes, the diet may be high maintenance, but she is not on an extra medicine and there was not surgery or anything like that involved. We are SO grateful!

***Special thank you to my sweet cousin Bri, for spending time in the hospital with me and my girls, to Mindi and her family for taking the time to come down to say hi even though they have so much going on, Christine for always being a light in a dark time, Ric and Deb for your help, the Rieger's for letting John come down and taking care of our Jake, and to the greatest CA in the world, De'Ja.***

De'Ja and me when we finally got to leave.

It was a really hard 9 days and the diet is definitely requiring me to spend a lot of time researching, preparing, etc, but I'm so grateful for the relief it has provided Evie so far. 

Thanks to Children's Hospital in Denver and, more specifically, Dr. Park, Chelsey and Jenn! 

If you happen to run into a nurse, CA, CNA, etc, today, give them a hug. They are the unsung heroes of hospitals.

-kt

The Children's Hospital and a Road Trip!

We headed in for our Extended EEG at the end of April.

The goal was to find out what is exactly happening in her brain so that we know what to do next as far as testing and treatment goes.

I cannot say enough good things about the staff. You have to be a saint to work on an inpatient unit at a children's hospital and the staff at the hospital in Denver are no exceptions.

Fortunately, the Little Miss was able to keep herself busy most of the time and our frustrations were kept to a minimum.

Unfortunately, the neurologist told us, "She's kind of a mystery." So, we're on to the next set of testing.

But, this neurologist has a plan... and compassion... and the goal of making her well (as opposed to simply medicating her, like her previous neurologist did).

And, for that, we are grateful.

The Little Miss was also grateful that her Nonni could come play with her when mommy needed to talk to the staff.

(oh, and the campus was beautiful)

Only one day into the test, and she was worn out. The neurologist decided very early into our stay that continuing the EEG would not provide any additional insights into her case, so he let us go after a blood draw that they'll use for genetic testing.

I was pretty tired, too,... and also grateful that my mom was around.

The good news is that this neurologist has a plan. He really seems to care.
The tough news is that this is not going to be a short journey. Unless God chooses to heal her (which we're still praying for), it looks like this may be a long-term battle for her.

Having a sick kid is not easy. I would give ANYTHING to be able to fix her.
But, her little spirit cannot be crushed. She is able to laugh and find joy regardless of her circumstances. She had electrodes cemented to her head and chest and cords coming off of those electrodes which were all drawn into a box which she had to carry around in a backpack that was connected to a computer and what did she do??? She put the box in her backpack, put the backpack on, put on her super hero cape, and "flew" as far out into the hallway as the cords would let her, bringing a huge smile to everyone who passed.

Trying to shampoo out the cement when we were released

That's my girl.

When we got to leave the hospital.

She is only 2 and yet her spirit and personality speak volumes.

I was sharing how overwhelmed I feel by the fact that we may have a lifelong journey ahead of us and how it's going to affect each of us differently. My husband's daughter has seizures. The Little Mister will grow up with a sister that has seizures. Ev may never be allowed to drive. Our new daughter (coming in August) will never know life apart from a sister with seizures. It will effect what we do, how we play, maybe even how we eat. But my mother-in-law gently reminded me that this is her normal. It won't be weird to her or her brother or sister that she has seizures because it is their normal.

I hope that Ev's healing from God becomes part of their story, too, but if it doesn't, I hope that John and I can together show our kids that even though tough things happen, our family's "normal" is to trust that God has allowed it for a reason and to trust Him always.

I hope they don't see me mourn what won't be true in Evie's life, but instead rejoice over what is true... she is an otherwise normal, vibrant, affectionate, sweet, rambunctious, active, beautiful girl who brings joy to people.

This journey is hard. Sometimes I get weary in the unknown. Weary from the medicines, the appointments, the tests. But, we do have much to be thankful for.

Including people in our lives that allow us to be sad for her sometimes and grateful others.

There is no perfect way to handle having a sick kid. I could let myself get really bitter (and don't let me fool you... sometimes I really struggle!). I could just be floating on the "it could be worse" cloud. But, the truth is that some days are better than others. Some days I need grace for being bitter and some days I need to simply be in awe of the fact that she is a miracle.

I don't claim to have this figured out. 

I'm sure I never will.

But I am grateful for each day with her.

Even the tough ones.

I hope that when people look at us on our good days, they see "the peace that passes all understanding" that comes from God alone. (Phil 4:7)

And, I hope that on our bad days, they are able to see that we are human and need grace.