Back in January I quit my job… well, actually... I knew it was time to quit because it was no longer benefiting anyone involved including myself, my company and most importantly, my family.  I went into a meeting with my boss to deliver the news.  After I spoke my peace, she let out a sigh of relief.  She had prepared a severance package for me to deliver in the same meeting.  I don’t believe in coincidences.  It was meant to be. I do miss my job.  I really liked it.  However...

I left with a few things on my mind in terms of “what’s next”.  I wanted to help other families dealing with epilepsy.  I wanted to help our dietitian who had helped us so much.  I wanted to write a book.  And I wanted to put more time into our real estate business.  I haven't completed all those things, but I’ve made progress!

The one that has been consuming most of my time over the past six months is the house that we’re flipping in Englewood, CO.  The hardest part of flipping is finding a good deal on a house.  We were dragging our feet not wanting to get back into the nitty gritty of real estate because we understood the time commitment. Low and behold, this house landed in our laps - it essentially found us.  (Side note: we are actually splitting this project with my brother because without me working, it just wouldn’t happen financially.)

So, we took possession in June. At that time, I wondered, wow... what did these people go through to abandon a house in this condition?  Why was this house mistreated?  What’s this houses story? Whatever it was, I saw the potential in this little ol house. It had good bones!

Click here to see BEFORE/AFTER PICTURES!

Click here to see LISTING PICTURES!

Today was a good day.

This week we took Lily for a 24 hour EEG. I think it’s God’s sense of humor, but it was the same room where this journey BEGAN back in May of 2012.  Where her first EEG results and Doose diagnosis were delivered.  Yesterday she was hooked up to 20+ wires, bandaged, then sent home with a little backpack with a computer in it that recorded her brain activity.

And oh, was Lily Lily.  In her pigtail braids with a perma-smile and love for life. No complaints… just smiles and dancing!  We went in today to have them taken off. Then we waited for results.


And because our doctor is amazingly fast at getting back to us, we received this email at 4pm today:




The emotions are overwhelming to say the least.  Two and half years of fighting every day.  So many failed pharmaceuticals.  Two years of the daily struggle of the diet.  Two and a half years of daily seizures - so many we can’t count. Years of anxiety, stress, fear, darkness, anger, desperation and despair.  I can’t say for sure it’s over, but IT IS ENDING!

What’s working?  CBD (aka Charlotte’s Web)

We told Lily the good news and how proud we are of her.  Her response - giggles followed by “no, you’re not proud of me!” And more giggles!  We’re working on Annie.  She’s a little younger, so it typically takes a little longer for her to understand.  But she has goodness coming from all this too!

Ahhh… so a new beginning.  Healing.  For Lily that means we can continue to wean her pharmaceuticals until she’s completely off.  We can continue to work on catching her up developmentally and physically - and see progress.  We can resume some more “normal” parenting.  For us that means putting some of the worry to rest.  It means we can focus on something further out than today.  For us that means healing too!

I’m overjoyed.  I’m excited for what’s coming.  I’m happy.  I appreciate life.  I appreciate the love Jason, Lily, Annie and I have for each other.  I appreciate our love for God and more importantly, His love for us.  I’m walking around with a lump in my throat.  There’s a part of me that is still in disbelief.  But, I’m not sure if it’s just the impact of the past couple days or the impact of the past few years, but the most overwhelming feeling is that of utter exhaustion.  I feel like I just ran a marathon.  I’m tired.

Lily has been seizure free for a month now.  But I can only think about the moment I’m in.  I have to take it day by day. I thank God for every good day.  But I’m not at a place where I can look back at the past or speculate the future.  I just can’t.

With Lily feeling better we get to experience LILY a lot more.  This Halloween was a lot of fun!  She was a pumpkin last year, but wanted to be a pumpkin again.  Annie was “Bepunzel”.

Getting a real picture with cute smiles is an impossible task especially when we’re dressed all silly.  CLICK HERE to see more pictures!

Lily was so excited for candy this year!  She got to eat candy for the first time in over 2 years and once she got a couple pieces in her, she started being so goofy!  She shook her little booty and sang “pumpkin booty, pumpkin booty, pumpkin booty!” followed by giggles!

She loved handing out candy.  As the other kids were walking away from our door, Lily would say “Happy Halloween.  I love you!”.  So funny!

Annie got to wear make-up which was cute but I was little uncomfortable with her looking like a little teenager!  She has been nothing but a chatter box lately.  Jason and I have to just laugh because we’d probably go crazy if we didn’t.  Seriously… sometimes you just want to say “shut-up!”  But it’s also so cute.  She’s been into saying “Oh my gosh” lately.  Somehow (certainly not due to example by her parents) it started turning into “Oh my Gawd”.  We told her we should only say God’s name when we’re praying so it’s best to say “gosh”.  So she spent about 20 minutes the other night saying “Oh, my gosh, God” over and over and over.  How are you suppose to keep a straight face?

Her latest... “Mommy, is it Marchuary yet?”  Ha!  I know sweetie… I wish it was Marchuary too!  Marchuary eleventeenth!

I wanted to update everyone on Lily’s treatment since we’ve had to make a lot of big decisions lately.

Jason and I had a gut feeling that the CBD treatment that Lily is on was giving us more control than the diet treatment. We were fighting what our gut was telling us for awhile and we finally decided to listen and wean her from the diet. The turning point for me is when I realized that it is totally possible the diet effects how the body metabolizes CBD and we might not see the full effect of it until she’s on a normal diet.  It would take a long time to explain that, but it’s very possible especially in Lily’s case.  So, over the course of the past three weeks, we’ve come off the diet!

Going off the diet isn’t just a decision.  It’s a process.  And we’re still working through it.  Come to find out Lily has been programmed to eat a keto diet and is scared to venture.  We are slowly presenting her with new foods and leaving it up to her to try new things.  When she gets scared, you can see fear in her eyes and she is so confused.  She goes into fight or flight.  It’s so sad!  So we are taking it slow.  But we know she likes apples!

She’s no longer in therapeutic ketosis.  So that means we don’t have to poke her finger 2+ times a day and we don’t have to measure food.  No offense to parents who don’t have kids on a special diet, but you have NO IDEA how easy you have it.  The past couple weeks without measuring food has been so enlightening to me.  I had forgotten what it was like to just make food and give it to your kids and not worry if they eat it or not.  That’s it?! We are still avoiding sugary things and will probably never go back to a “normal” diet, but we are still amazed at how easy it is.  We can leave the house without making and packing a food bag.  And we can eat out almost anywhere.  This is amazing!

We aren’t 100% sure we can go without the diet, but so far things are looking good.  Removing the diet from the equation takes away a lot of variables.  We can now concentrate on getting the right dose of CBD without wondering if it’s the diet - ketones, glucose, carnitine, etc etc etc - causing fallout.  Once we feel good about the control we have, we’ll resume weaning her pharmaceuticals.  We are still on 600mg of Banzel and 25mg of Onfi.  We’ll have to wean Banzel at around 50mg per week and Onfi at 1.25mg per 2 weeks.  That means it will be over a year.  It’s another process and bridge we have yet to cross.

Over the past month we’ve adjusted CBD and taken her off the diet.  As a result, we’re seeing our Lily again!  And Annie has a sister for the first time!  When Lily was moody and not feeling well, Annie left her alone.  She wanted nothing to do with her and vice-versa.  Which required a lot of interaction with mommy and daddy.  Well, now, Annie has a playmate!  They play together now in a way they have never played together before.  And it makes parenting so much easier!  They love each other so much!  Just today they were in the middle of our cul de sac giving each other a hug and kiss!  They. Love. Playing. Together - I can’t believe that has been missing for the past 2+ years!  Poor Annie!

We still see mood swings and behavior issues, but not as bad as before.  She’s really been into using big words.  It’s almost like her brain has been absorbing information for the past 2+ years, but she hasn’t been able to process it to use it.  All of the sudden she’s processing all this information and is spitting out big words and things we’ve never heard before.  Today she told me she was “pwacticing good owal hygiene”.  What?  She’s also been getting songs stuck in her head. Up until now she hasn’t been able to remember words to a song let alone get them stuck in her head.  So hearing her sing the same song over and over and over and over, is music to my ears!

I NEVER forgot her personality.  I’ve been waiting for it to come back.  But I think the only people who truly remember it are Jason and I.  She’s spunky.  She likes to tease.  She’s a little sarcastic.  But the thing I missed the most is her real laugh.  The first time I heard it in 2 years was a few weeks ago.  It took me back to the very first time I heard it when she was just a baby.  When she was a baby I remember thinking 'oh my God, that is a great big, deep-from-the-inside giggle'.  I loved making her laugh because I loved hearing it. And seeing it.  Her whole face giggles.  It’s meaningful.  It’s true.  And it’s my Lily.

We went to Chi-fil-a for dinner tonight.  After eating the girls were playing in the play room and Jason and I chatted with a couple other parents with kids there.  The other parents were talking about the nuances of having toddlers/preschoolers.  They weren’t complaining, just talking about the challenges and miscommunications while rolling their eyes - in a funny, parenting-is-crazy sort of way.  Jason and I sat there quietly both thinking the same thing as each other, but just enjoying the moment. Because right before walking into the play room we were just saying to each other how the moments of “normal” parenting are getting longer and longer.  And OH MY GOD, it is so EASY!  Knowing that these other parents were rolling their eyes about something that seemed so easy, made me sit back, relax and feel completely capable of being a parent.  I haven’t felt capable of handling our situation since I can remember.  But I now have a resume that over qualifies me for what we have coming to us more and more. It’s like resigning from NASA to go work for McDonald’s.

Just so everyone knows…  Due to a combination of needing to hover-parent to keep Lily safe and her missing out on months of critical brain development due to frequent seizures, Lily hasn’t been able to develop some skills and abilities that are typical for a 5-year-old.  Many of them are things only we notice.  Others are blatant to anyone she comes in contact with.  But the good news is that it can be fixed!  We are clear on what she needs help with and we are getting her the help she needs right now, but she is still having seizures and still on a large dose of seizure medications.  So it’s also a process.

I’m suppressing a lot of emotion that comes with Lily turning five.  It still seems like she should only be two.  The past couple years got away from us and we seemed so focused on taking care of her condition that time passed without us being able to appreciate it.

But then I think about all the time I spent with her sitting on the floor putting together puzzles because that was the safest game for us to play.  And all the time I spent with her in my lap.  All the nights I’ve slept with her.  All the exciting “firsts” we’ve experienced that only come with special circumstances.  All the tears we’ve shed watching her gain her independence.

And it seems like five years isn’t enough time for all that!

I’ll give an update on her treatment in another post, but we are struggling with mood swings.  Yes, typical for a lot of little kiddos, but a little different for Lily.  Therefore, Jason had to do some creative acrobatics to get a few good pictures of Lily.  There are lots of odd crops and similar poses because we take what we can get!  Jason was literally moving the earth trying to get Lily to smile.  And I had to keep my camera to my eye ready to snap a shot if the corners of her mouth ever so twitched upward.  LOL! It wasn’t quite as bad as I make it sound.  Oh, I love her!

See her pictures HERE.

We had some friends meet up with us at the Alpine Slides for Lily’s birthday party.  We’ve always enjoyed trips to the slides ever since the girls were less than a year old!  So it was fun to share it with friends who have NEVER been!!!




It’s been awhile since my last update, so I’ll add a few other pictures from earlier in September.  I had/am still having a hard time saying good-bye to summer.  I think it’s because I got to spend more time enjoying it along with the girls this year.  We spent Labor Day weekend hanging on to it by our fingernails!  Hiking in Boulder and the last swim at our pool.




But we are now settled back into school.  The girls started back at gymnastics and are now playing on a soccer team!

It seems that even with joy comes a little pain.  Why does life have to be so bitter sweet?  Maybe it’s because without rain, you don’t know how to appreciate the sunshine, right?

We have made the almost impossible decision to move (no, not back to Nebraska - building a new home here in Colorado).  Just like a lot of decisions over the past couple years, we never thought we’d be moving, but one day, we had a change of heart.  I’ve learned to trust a change of heart because I truly believe that is how God guides us.  And it hasn’t led us astray yet.

But moving is a bitter sweet.  If we think about the four walls of our house, we want to GET OUT!  We want to go far away from the memories that are here.  Maybe the memories will always remain and it’s more of the triggers we’re trying to escape.  But whatever the case is, we desperately want something new and fresh.

The bitter part is thinking outside our four walls.  We would have probably moved back to Omaha two years ago if it weren’t for the support from our neighbors.  It’s not just “support” - they held us up.  What we have here in the 57th Place cul de sac is something that doesn’t exist anywhere else.  And that makes it almost impossible to give up.  And that is also why we considered hiring an arsonist just to burn our house down so we could build new right here!  (Which is illegal and I would never do that… fyi.)

With a new house we’ll essentially be cashing in on some equity of our home.  Our new home isn’t necessarily a downgrade, but it allows us to pay some things off and for me not to work for another year or so.  Also, over the past four years we haven’t done any work to our current house.  Now it’s to the point that every room that I walk into has a “project”.  A new home buys us a good few years before we have to think about maintenance projects. And a few years to focus on our family’s healing and Lily’s recovery, is a good thing.

Some details of our new home…. We’ll be moving to Leyden Rock in Arvada.  It’s only a few miles north of our house now.  We’re building new and expect it to be completed in February/March.  It’s a two story with hardwood floors - that would have been a nightmare two years ago but something we’re excited about now!  The neighborhood has a nice park and pool because that was something we couldn’t give up.  It has smaller lots but something we know we need to get use to in order to afford a new home.  We might not have the “killer” views that we have now, but not too shabby either.  I have a hard time telling when I’m just getting lip service from the sales person, but he told us the lot next to our was purchased by a family with two girls - ages 5 and 3.  We’ll see… that’s one I’ll believe when I see it!  But it would be pretty exciting for the girls if that was the case!

I try not letting my head go to that place of “what if” but sometimes I have to wonder what our lives would be like IF things were different than they were over the past couple years.  I don’t want to dwell, but... would I be working, would we be moving, would Lily and Annie have a brother or sister, what would our financial situation be without medical costs?  Hmmm... coulda, shoulda, woulda… here we are and what a journey it’s been!  We’re hoping we can start cashing in on more of the good that comes with the bad.

Moving is stressful, we know. That’s another bitter thing.  But the sweetest, joyous, exciting, sunshine-iest thing we have to look forward to is a fresh start and a chance to make new memories!

Update on Lily:  We had a 12 day stretch without any seizures!  We have now seen 5 nights straight with seizures which is a bummer.  But we think we understand why we had 12 good days and we think we understand why we had 4 bad days.  And it can be corrected.  It’s just a matter of reducing one of her seizure medications that is making her “toxic" because we are increasing another medication.  (I know more about the P450 liver enzymes than I ever care to.)  But reducing medications is a very, very slow process.  We can take away 1.25mg of Onfi every two weeks.  She’s on 28mg.  If you do the math, that’s a long time!  But hopefully we can reduce her levels enough over the next month to have an impact.  We’re hopeful!

A peek into our lives:  When I have the girls home with me in the afternoons, I find myself laughing a lot and not with them, AT them.  They are at such a cute age!  Lately I’ve been laughing because they don’t have any concept of time which is evident whenever Annie tells me she wants to go to the park “esterday” and when Lily tells me she drank all her milk “last week” which was just last night.  But it’s the small things, right?

Lily has been into tucking things in lately.  And when she’s wearing a dress and doesn’t have pants to tuck things in, why not tuck into your undies?  At school, restaurants, outside… why  not?

If there is any kind of a breeze outside it seems we need our stocking caps even in August.  And a fake tomato in our mouth.  What?   So Annie!

They say keto kids enjoy feeding non-keto siblings non-keto food. And we’ve seen this several times before.  And Annie likes it! The crazy thing is that Lily wouldn’t even think of putting a bite in her own mouth.  She just knows!  It’s pretty amazing and pretty heartbreaking… some day she’ll be able to dive into her very own bowl of overpriced Kraft mac and cheese at a restaurant!  Can’t wait!

Every night I kiss Annie goodnight and I just get taken away with how much I’m in love with this little girl!  She is sweet to the core!  She makes everyone feel so loved!  If you’ve ever felt Annie’s love, you know what I mean!  She fills me up!

My Dad drove out to visit with my niece, Jaeli.  Dad stayed for a few days and then headed back home.  I got to keep Jaeli all to myself for a few days before my brother and the rest of his family came out.  It was busy, but a lot of fun!  My brother brings a lot of comic relief that is needed in our house!

Jaeli got to feel the Annie love!



Jaeli also helped me get Annie’s 3-year pictures taken.  Just a month late, but CLICK HERE to see them all!  She has so much personality!

We’ve been doing our best to enjoy summer in Colorado.  Our traveling is done and the girls are back at preschool.  So we’ve enjoyed local activities and had some visitors out to see us!

We gave camping a shot for one night mostly to prove to ourselves that we could do it.  We might have been a little too aggressive.  We were only 20 minutes from home at White Ranch, but we biked 1 mile (uphill) into the mountains to get to our campsite.  It also rained, but it made the experience just a little more “real”!













We are enjoying our pool a lot this year!  We had a broken leg last year and too many seizures the year before… so we’re loving it now!