Life as we know it

Hey Ivie Mae-bay. That's what I call you, either that or Ives. I can't believe you're turning one. It seems like yesterday I found out I was pregnant with you after one miscarriage and lining tests up to see if you were healthy. When I found out I was pregnant with you, I told your daddy and no one else for a while. We kept you our little secret for a while until we knew you were healthy. I think we knew deep down you were, because we trusted God, but the odds were stacked against you. You were "supposed" to have either Cystic Fibrosis or Microcephaly like your sister, so we call you our miracle baby. You didn't have either, and you were a perfect little baby growing inside of my tummy, so at 10 weeks after genetic tests confirmed you were a girl, we named you Ivie Mae. You and I got lots of bonding time your last two weeks in the womb. We spend those two weeks in Greeley, sitting on a bed in the hospital, as I got to hear and watch your heart beat 24 hours a...

It's been one year since we prepped ourselves for a scary surgery for Zoie; her VNS surgery to somehow help her seizures. Little did we know, it would cause my water to break, and that Derik would be taking care of a post-surgery girl all on his own. Taking a few steps back, last March 14,2014 we showed up to Children's, or I actually waddled in being 31 weeks pregnant and huge (I thought so anyways) to prep Zoie for a much anticipated surgery. I think we knew it would be easier to get it done before Ivie made her debut, and we were hopeful it would help Zoies seizures. I remember waiting in the room, Zoie in her little gown, spending time in the playroom to waste time until the operating room was ready. Around 11, we carried her to the CT Scan room where they would put her under, do a CT Scan of her chest for Pulmonary purposes, then wheele her off to surgery. That was tough. Laying your child down and kissing them and holding their hand, as they have no idea what's about ...

It seems like February creeps up so quickly every year. It means we are closer to Spring and warm weather, we did our 65 Roses Fundraiser, Valentine's Day, and Rare Disease Day is Saturday Feb 28th this year. I never knew what a rare disease was, and I say this not proudly, but nor did I care a few years ago. I was in a, "life is perfect, life is beautiful, nothing bad ever happens" type of world. I wish someone would have informed me about some rare diseases, how to learn about them, how to bring or raise awareness for them, and how to support someone who was going through something like this. But, no one did. So I'm going to be that person, and inform you, and probably tell you more than you want to know, but knowledge is power, and maybe by sharing some of these things with you that you may not know, you will one day be able to help someone. Or even be there for someone. Rare diseases suck. They suck because with 90% of them, you will hear the word fatal. Fatal me...

After our few recent Hospital stays with Zoie because of seizures, and med changes, we were hoping for a week span between seizures. We made it four days and she had one today. Not a bad one, more because she was exhausted from waking up at 5:45 by her choice and not letting her brain settle down enough to nap. At the time, I get frustrated, mad, and loose patience from these dam things, but after hours of Parenthood, and cuddles all afternoon from my girls, I said to myself, "at least they stopped, weren't in her sleep, and we went four days without any :) I have to pull the good out of each day, or lots of days would stink. So now we keep waiting for the new meds to take full effect, pray and wait for the red card. One step at a time. Even with seizures we had a fantastic day. We delivered Valentines to all Zoie's little friends, I got my yummy iced coffee because I'm always tired now days, we went through all the 12-18 month summer clothes that soon my little Ives ...

Does anyone else get the Sunday Blues when Christmas is all over and you're taking your stuff down saying, " sheesh that went fast! Now what?" I do. And it happens every single year. Although, it would have helped if our snow would have come a little sooner rather than these 50 and 60 degree temps. That didn't help make it feel like Christmas one bit. I'm a Christmas lover. Lover isn't even the right word. I eat, live, and breath Christmas for as long as I possibly can, or as long as my husband will let me. It makes me feel cozy inside! As I went through Starbucks today to order an Eggnog latte, they said they were out for the season..... How are they already out before New Years is even here? I have the lady grief at the window! It's like they were excited to get their red cups out of there along with their eggnog or something. Ha. My family had a beautiful Christmas. It was perfect. I was such a nervous wreck leading up to to because it's always a r...

November is usually the start of the holidays for us. We used to wait until almost Thanksgiving, but since having kids, it's necessary to start much earlier! I'm sure my husband would agree ;) With that, I'm leaving you with my most favorite things about the month of November. Christmas movies! If it were my choice, we would watch them all day everyday. The music, the happy endings, and how they make you feel all fluttery inside. Some of our favorites are Home alone 1 & 2, the Grinch, Christmas Story, Elf, Miracle on 34th street, and Christmas with the Kranks. Starbucks holiday drinks and the red cups! Pretty much, it's Christmas in a cup! Traditions: we love traditions that start in November! One we started three years ago was hosting Thanksgiving at our house. It's nice to have the girls at home and be able to cook for everyone. A new tradition we started this year was inviting our family with Turkey Tickets. Each person must fill out their ticket with ...

Derik and I raise money for Cystic Fibrosis year around. We have never raised money for epilepsy. Let me tell you why. CF is easier for us to deal with than epilepsy is. I'm not comfortable with epilepsy yet, even after seeing my daughter struggle with seizures for three years. We avoid it, because it's a touchy subject. But, with that said, November is Epilepsy awareness month, and in honor of my sweetest Zoie, since Nov has 30 days, I give to you 30 things we, not everyone, has experienced with seizures and epilepsy. I'm hoping this helps me by opening up a little about a "not so easy" subject, and that it let's you all into our world a bit. With this, be kind to the families, friends, and people who struggle with epilepsy on a daily basis. It's not easy. *Zoie had her first seizure when she was 2.5 months old *She was originally diagnosed with meningitis *at 4 months she was diagnosed with microcephaly or small head which was now the cause of her epi...