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Showing posts from 2015

Someday I'll wish upon a star....

Okay, so, since we have never went on a family vacation, im not experienced on blogging them obviously. Bare with me, as I do my best to share in words with all of you,Zoie's Make-A-Wish beach vacation to Newport Beach, CA. Zoie's wish got accepted about 2 months prior to our vacation after going through several steps and an interview process with Make-A-Wish Colorado. Obviously Zoie couldn't tell us in words what her wish would be, but we know she loves the water, she loves textures, being outside, on walks, on runs, and music, so what better place to experience this all than at the beach! We choose Calofornia because it was fairly close, had Disneyland, we knew the temp would be tolerable, and Newport had the Boardwalk. Make-A-Wish was SO accommodating in every way, in helping to make sure first and foremost that Zoie's needs were met! Our family friend, Erin Hoffner threw us a wonderful, beach themed, send off party two weeks prior to our departure. Here, we got to

A letter to my daughter on your first day, of your first year of school.

I remember when you were born, 4 very short years ago. School wasn't even in your dad and I's minds. It's almost as if we forgot that when you have a child, part of them growing up is sending them off to school. You would think this would have crossed my mind being an Elementary Ed Grad, but we were so caught up in the now, and making sure we took our lives day by day, that no, school never came up. We decided to keep you home for your first year of preschool, due to your Cystic Fibrosis and learning delays. We wanted to strengthen your immune system an extra year, keep working on home therapies to help your brain development, speech, and muscle movement. You also had a very special friend at home to learn and grow with you; your baby sister Ivie. The last year you two have taught each other so much, she has pushed you, and you have pushed her. I'm so thankful we kept you home for that extra year! We have found a great preschool for you! It's called the Monroe Ear

My role as a mom is like peanut butter and jelly

My role as a mom is like peanut butter and jelly. Zoie is my peanut butter, Ivie is my sweet jelly. With Zoie, things can get sticky real fast, her diagnosis can complicate things in the blink of an eye. Ivie isn't quite as complicated or sticky, but we all know these healthy kids can be complicated too, just in different ways. In this circumstance, different colors. I'm lucky enough to have a peanut butter and a jelly kid, as im sure most of you are. Your peanut butter may be your little toddler who throws himself down in the middle of the aisle at Target, or your teenager who argues you about everything. Your jelly may be your sweet newborn baby who just lays there and sleeps all day, or your precious 5 year old who has started taking care of himself and given you a bit more freedom finally! If I make a peanut butter and jelly sandwich, it may look similar to yours, but never exactly the same. As moms, I believe we need to think of our bunches of kids the same way. My peanut

Tid bits

I feel like I have so much to catch up on! Birthdays, running, doctors appts, and the girls have kept me so busy. Spring time is always the busiest time for us, even more so than summer! Okay, to get one thing out of the way, Zoie had a hard, or I should say, we had a hard appointment at Childrens two weeks ago. her checkups with CF and Neuro were perfect! She is in the 14th, yes 14th percentile for weight! This is huge for us! Her lungs were clear, her meds and CBD oil are "working" as good as expected for now, and her GJ tube swap was easy breezy. All of this was kinda overshadowed at the end of our neuro appt when our awesome, yes an awesome doctor asked us if we had done anything to prepare for the future. I have a weird relationship with our neuro doc. I love her because she is amazing at helping us manage seizures, and she's on board with CBD. I hate her because it's so easy for her to say to us "how Zoie will probably pass" or "have we thought a

To my sweet Ivie Mae on your first birthday

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

One year, two weeks.... Seizure control

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

Rare Disease Day 2015

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

Having it all together

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