What is Joubert Syndrome?

.#dietzenfameveryday2014 {week 50}.

You guys! We are down to the last few days of 2014! How in the world did a year go by so fast?!? Anyways...here is week 50 of 2014 in our lives through Instagram!

Day 345: Selfie tummy time with baby girl!

Day 346: This little guy loved decorating Christmas cookies. The whole process of frosting and decorating cookies with a 4 and 2 year old was quite the messy experience...but they had fun!

Day 347: Tried out the jumper today...not quite big enough yet since her feet don't touch the ground but this girl is ready to move!! Would much rather stand and bounce than sit or lay. So much fun to watch.

Day 348: Spent the morning at the urgent care with this sweet boy. Bronchitis, ear infection, and possibly strep :( Poor Parker!

Day 349: What do you do when you have two sick and very temperamental toddlers, a fussy baby, and a mama who is going stir crazy?!? Put one on his plasma car, one to bed, and strap one in the front pack and get some fresh air! Either that or start drinking... :)

Day 350: Helping daddy water the tree! Such a good helper :)

Day 351: Little miss helping me make breakfast this morning! Couldn't ask for a better cooking buddy :)

.#dietzenfameveryday2014 {week 49}.


Day 338: Our story was featured on CNN today!! Some of the facts aren't totally accurate but it's exciting to share our story. God is working through this whole journey!

Day 339: Just spending some time in the kitchen baking mama some cookies :) 

Day 340: Girls trip to Leavenworth!! So festive and such a fun way to celebrate the season!

Day 341: Decorating the Christmas tree with my little helpers! Christmas is going to be so fun this year as the kids are mesmerized by all the magic of the season. They are starting to participate and be a part of our traditions. So fun!

Day 342: Getting unexpected letters of encouragement in the mail are one of the biggest blessings! Our words hold so much power and for someone to take the time to write encouraging words is amazing. Completely made my day!!

Day 343: Kinda hard to see by I put her hair in a high pony with a bow! Ha it looks ridiculous but I can't believe at 2 months she has enough hair to put up!!

Day 344: Parker meeting his cousin Paxton who was born today!! Welcome to the family baby boy!

.#dietzenfameveryday2014 {week 48}.

Day 331: Words can't express my gratitude for these three beautiful blessings in my life. So thankful for the life and family that Nick and I have been blessed with! Happy Thanksgiving!

Day 332: Elle found herself in the mirror today at her 2 month check up and couldn't stop smiling :) Even she knows she's cute!

Day 333: Put her up on the couch to protect her and keep her out of their sight...they play for a while and then figure it out and go straight to get her!! Little girl is so loved but sometimes a little too much!

Day 334: Evolution of baby Elle's smile :)

Day 335: Happy 7th Anniversary to my love!! We've lived a lot of life in these 7 years and been through a lot of circumstances that would tear most people apart but we've grown stronger than ever! Can't wait to continue building our legacy together! I love you Nick!!

Day 336: Date night out to celebrate our anniversary. Christmas shopping and dinner with no kids...uninterrupted conversation and time together :)

Day 337: Tummy time cuteness!!

.#dietzenfameveryday2014 {week 47}.

A few weeks behind on our weekly photo update from Instagram! but here is an update :)


Day 324: Parker is so excited about the dusting of snow we got and will not come inside!! He's trying to convince me how fun it is and why I should come play with him :)

Day 325: Sitting on the floor of my van eating McDonalds with the kids between school and therapy. You can be jealous, I know, it's a glamorous life I live :). But in all seriousness it was a fun memory with my boys and I love my mini van for reasons like this.

Day 326: This little chunk is already wearing 6 month clothes!! How is this going so fast?!?

Day 327: Livin the life! Milk in their chairs in cozy pj's watching Curious George. Can I be a toddler again?!

Day 328: Parker insisted on reading baby sister a book before school this morning. He's showing her all the pages and pointing things out :)


Day 329: How I workout these days. Always have little feet by my side. Makes it a little challenging but their smiling faces are good motivation. 

Day 330: The boys wanted to "nuggle" last night and share a bed so I decided to let them. Went in to check on them and found this. Be. Still. My. Heart. Love that they have each other and are forming that brotherly bond!!


.CNN feature.

A few months ago, I saw a posting from CNN looking for families who are raising special needs children to share their story. Always on the lookout to share our story, I jumped on the opportunity and submitted our story. 

I published it and shared it on social media, and to my surprise it got an enormous amount of views in a short time. Due to the response from sharing our story, a reporter from CNN contacted us to get more information.

She was working on a piece that would feature 5 different families who were raising children with special needs and they wanted us to be a part of it. 

Over the past few months we have done a few interviews, sent images and videos and shared parts of our story. The article was published today and we are so excited for the opportunity and chance to share what God is doing through our kids on a bigger platform.

Some of the information isn't totally accurate and some of the milestones are slightly off but the overall message and information is correct. That despite the unexpected diagnosis we have hope for the future and think of our children as miracles!

Below is the link to the story on CNN: