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

Three

I've only been the mom to three kiddos for a month now, so I don't claim to be an expert here, but... here are some of the things I've learned this past month.


1. Us parents may be outnumbered now and we may have had to switch from man-to-man to a zone defense BUT we still have four hands between the two of us and there are only three of them so we still have the advantage... right?

2. 2-year-olds enjoy having a baby in the house for approximately 15 minutes each day. The whole rest of the day is spent in agony over the fact that they no longer can command mommy's full attention at any given moment.

3. Number 3 has the ability to know the second you are about to put food in your mouth and will demand to also be fed at that precise moment. Count on it.

4. With all the baby gear finding it's way out of storage, my otherwise uncluttered house is beginning to feel quite claustrophobic. I feel another round of purging, garbage and donations coming on... if only I could find the time...

5. Being SUPER INTENTIONAL about spending time with your spouse becomes even more important. Merely being roommates is unacceptable. We must be a team. And there has to be life-giving friendship and romance between the two of you or these days can get long and lonely.

6. Making sure the older kids feel connected to the baby at least once a day is invaluable. Letting them "hold" her or help with a diaper change (read: throw away the dirty one) makes them feel like they are important and they seem to love her even more in those moments. And, it helps them be more patient when she is taking me away from them temporarily.

7. Having some alone time in the morning before the older two wake is even more important for me now. I gotta get my game face on before the littles attack my morning. Otherwise, I feel like this...

8. Let people love you. Having help is not a sign that you can't do things on your own. It's simply an expression of the care that others have for you and, frankly, a blessing. Accept it.

I'm sure I have many more lessons coming my way, but this is all I have time for right now.
-kt

Fun on the 4th

I love the 4th of July.

The weather is usually great, it's a good excuse to see friends and family, the food is fantastic.
As a kid, it usually included going to my aunt and uncle's lake house, Mt. Pleasant fireworks with my dad's popcorn, the big fireworks on Lake Michigan (ALWAYS with good friends), popsicles, potato salad, bbq chicken by dad on the grill, bonfires, pool time and loads of sunshine.

And, the occasional matching t-shirts from Old Navy.

Seriously, who didn't have to wear one of these as a kid? And, a better question, will they EVER stop making them?

This was our third 4th of July in CO. And, while I have very high standards set by good ole Racine, I have to say, Lake City does the 4th well. If they didn't, I'd be tempted to travel back to WI just for the holiday.

It was a little bittersweet for us that this was the first year John wasn't riding a horse in the parade. It is so fun to watch him and other camp people riding by on our sweet horses, but this year he actually got to sit with us! So, that's fun.

We live in a town of between 300-400ish but for the 4th, our population EXPLODES. There are people everywhere. My parents were here for the 4th last year and laughed when I told them this morning that we actually had a traffic jam in town after the fireworks last night. We sat still for no more than 5 minutes. BUT, to us, that's a HUGE traffic jam.

Anyway, on to pictures!

The day starts here with an all-you-can-eat pancake breakfast at the school (which we didn't go to) followed by a parade (which we did go to).

Somebody was mesmerized by the firetrucks...

I think he gets that from his Papa Scott.

Then, this fella came wandering through.

Because what parade is complete without Uncle Sam on stilts? No parade I want to be at, that's for sure.

I got to see this lovely lady. (Check out her blog for tasty recipes)

This is most people's opinion... especially during this holiday...

This little lady was a trooper in the hot sun. She especially enjoyed when they started throwing candy. (note the clenched fist)

The parade is followed by booths full of goodies, crafts, and fair food around the park and near our shops "downtown" where you can find ice cream, coffee drinks, t-shirts, souvenirs, candy,... all sorts of goodies, all with an old-fashioned, small town feel.

The park is packed with tourists and locals and everyone anxiously anticipates the start of the foot races.

No kidding.

The afternoon is spent with all different age divisions participating in foot races at the town park.
Hilarious.

And, cut throat. Some of these races get intense!

We made the executive (read: mommy and daddy) decision to take our kiddos home to rest. But, not before getting our annual turkey leg to share. (Yum!)

The kids were exhausted. And, in true Lake City fashion, it down-poured during the afternoon anyway. Here, that is welcome. It cools off the heat of the day and always brings that sweet mountain smell. I think that must be what Heaven smells like.

Anyway, the next stop for us was dinner, games and fireworks with some sweet friends that evening.

We played this game (that I can't remember the name of) and other than the times when my third-trimester-sized belly got in the way, it was really fun!

This little man is not picky, as long as it has wheels and he can get some good speed, he'll ride it.

And, then there is this girl.

We do NOT take enough photos together.

But, I try to get plenty of them!

Ok, so we were up the hill where Lake City starts. There is a valley you can't see in this picture that town is nestled in.

WAY across the valley (I had my 'big girl' zoom lens on my camera) and up another hill is a water tower. That is where they shoot the fireworks off from. This picture is of them watering down the brush near the water tower. Can't be too careful!

Here's a picture pulled back a little further. The circle is around that water tower.

And, this was my first attempt at firework photos with my 'big girl' camera. What do you think?

After the fireworks, when all the kids were nice and sleepy, someone wrapped up the little miss and she turned to me and said, "Look! Mom! Cozy," with the sweetest smile on her face. 

I'm so thankful for the men and women who have gone before us and for those who are currently devoting their lives to making sure that my family and I can have days like this.
Hope your 4th of July was as great as mine.
-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.