.#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:

http://www.cnn.com/interactive/2014/12/ireport/unexpected-lives/?hpt=hp_bn11

.#dietzenfameveryday2014 {week 46}.

Our week according to Instagram!

Day 317: All three kids were sleeping at the same time today, the house was cleaned this morning and I had nothing that needed to be done immediately. I actually got to sit on the couch and read. By myself. In silence. It was heavenly!!

Day 318: I got to have a lunch date with this sweet boy after school today. He got chosen to be the example child for physical therapy students today and did amazing!! Love getting special times with my first born and am so incredibly proud of all his progress and hard work. He is seriously the hardest worker I know!!

Day 319: Good morning world!! Happy Saturday!

Day 320: A little tummy time practice :) Lane thought he was being a big help!

Day 321: Parker thought it was necessary to use his "noculars" to watch a show on the ipad. I love watching their little imaginations work and hearing what they come up with!!

Day 322: Papa Stan is in town and Lane has followed him like a shadow! Somebody loves his papa :)

Day 323: Just jammin on the piano this morning at the children's museum!! He can crawl around and make a mess and I don't have to clean it up and he's learning and exploring while doing it!!

.#dietzenfameveryday2014 {week 45}.

Our week according to Instagram

Day 310: This sleeping beauty is 6 weeks old today!! Time is flying! Can't imagine our family without her sweet face. She is smiling all the time, getting so strong, bearing weight on her legs and sleeping a solid 7 hours at night!

Day 311: This is the face of a little boy who SCREAMED and thrashed alllll night long. Now at 6:45am he finally falls asleep! Off to the doctor we go today!

 Day 312: Well an afternoon of yard work turned into an afternoon at the urgent care. Apparently hedge trimmers are sharp and Nick's finger was the victim...so he will be rocking that blue bandage and a nasty scar!

Day 313: Lane has really grown to love his little sister and is always giving her pats and kisses. Tonight he was helping her with her paci and trying to put it in her mouth. Elyse thought he was pretty great too and couldn't stop smiling. Cutest moment ever!

Day 314: Baby Elle's first pair of seven jeans. I just can't even handle it with these girl clothes!!

Day 315: The boys started aquatic therapy together today! Parker was in heaven...Lane not so much!

Day 316: Little sis is full of smiles in the mornings!! Love seeing little bits of her personality starting to come through!

.dietzen dictionary: orthotics {AFO's}.

Both Parker and Lane wear something called AFO's, which I have come to learn are foot orthotics. The dictionary definition is as follows:

AFO= (ankle foot orthotic) is an externally applied device used to modify the structural and functional characteristics of the neuromuscular and skeletal system

These are what Parker's AFO's look like. When you get custom ones, they let you pick the design and colors.

 

When I first joined the Joubert Syndrome facebook group, a bunch of the parents were talking about getting AFO's for their children. I had no freaking clue what they were talking about and started to frantically google what the heck these initials stood for. Once I figured out that they were foot braces of some sort I talked to Parker's physical therapist about it.

Because Parker was not weight bearing on his legs much, we waited a little while to get him fitted for his, however, in hindsight I should have gotten him fitted right away. When Parker stands, his ankles and feet turn inward and he is very unstable. Because of the awkward way he bears weight on his feet, it makes it much harder and as a result he was very hesitant to stand.

Once we got him his orthotics, I immediately noticed a difference in Parker's ability to stand as well as his confidence in standing. I think once he felt that stability, he realized that he could do this on his own. Parker didn't get his first pair of AFO's until he was about 2 1/2 but we got Lane his first pair when he was about 1 1/2 years old.

You can see Parker's foot curling and leaning inward forcing him to have a wider stance while walking.

We get them custom casted for their AFO's because they are much more tailored to the specific needs of the child and help in the specific problem areas. Lane tends to be more flat footed without much of an arch and Parker has a high arch so his feet roll inward. With the custom orthotic it targets that specific area and makes it so they are both standing with correct form and giving them the support they need.

One of the major benefits to having them wear the AFO's at such a young age is not only helping them stand and walk, but to shape their feet and train their bones and muscles to have correct form and to grow in a way that will create the most stable base for them. With Parker wearing them everyday now and walking, I can notice a huge difference in his feet and posture when he is not wearing them. Before I could tell such a difference when he was wearing them versus not wearing them, but now I can see the muscle strength and way his body has learned to have correct form even when not wearing them.

Parker's posture and stability are noticeably different while wearing his AFO's in the picture above.

These are not something the boys will always have to wear, but for now it is a major asset to helping them grow and develop. They will most likely be wearing them for quite some time, but they help so much that neither of the boys have any issues with me putting them on and having to wear them. In fact, if Parker knows he is going to be standing or walking, he will ask me to put on his orthotics. He knows how much they help and likes that extra support.

At first this was something that I struggled with. When the boys wear them, people can see that there is a special need. It is something that you can physically see that shows their difference. We get more stares and more questions, especially in the summertime (when they are more visible) but it has actually opened a lot of doors for me to educate people on what they are and how they help.

You can see the tops of the AFO's here as well as his thera tog suit (I will talk about this on another post)

These have been some of the biggest contributors to the boys gross motor skill development and I am so thankful for their current therapy team that encouraged the custom orthotics and has encouraged us to make wearing these a part of our daily routine. 

.#dietzenfameveryday2014 {week 44}.

Here are our snapshots from this week on Instagram:)

Day 303: My little Lane! Brightens up my day with his sweet smile :)

Day 304: Baby Elle's first flight. Weekend getaway for mom and dad (with a newborn tag along).

Day 305: After a great day at the Dave Ramsey Smart Conference listening to some amazing speakers, we all met up for dinner with good friends and family!! Love our Southern California community and miss them so much!

Day 306: We got to see the best roomie ever Erin and her hubby Jon and baby Jet for breakfast! So fun catching up and amazing how we just pick up right where we left off! Love you guys!

Day 307: After our weekend away, all Parker wanted to do when he woke up from his nap was snuggle his sister!! He missed her more than he missed us!!

Day 308: Pretty much the only calm moment of the day! It was one of those days where parenting just kicks your ass...one kid puking, one kid screaming, the other won't let you put her down. Good thing I was rested and relaxed from our mini getaway! All I could do was laugh and give lots of snuggles...better luck tomorrow :)

Day 309: Fishy selfies with my boy before horse therapy :)