Water Park, Sleeping and Dilation

Enduring 115 degree weather here in Phoenix, is not something to brag about, however surviving it is another thing. We are so lucky to have a fantastic water park not to far from our home. By persuasion from grandparent's, we decided to get season passes and it was worth every penny. The water park has a humongous "splash pad" that both the boys LOVE. I have to be super careful with Emmett around water because of his tracheostomy. The splash pad is perfect for him to run around and cool off with out being submerged in a pool of water.

Ethan showing off his muscles at the splash pad.

Emmett stole Ethan's Gatorade bottle and sent him on a wild goose chase.

Emmett fell asleep in the car on the way home from a Dr's appointment the other day. He was so adorable I could not resist taking and sharing this picture. He is becoming so big!

On Monday Emmett went in to PCH for his last esophagus dilation before our trip to Cincinnati, OH. Emmett will be evaluated in the Areodigestive Program at Cincinnati Children's Hospital. We are leaving in a week and a half.  My nerves are starting to kick in. 

Safe Kids USA Blog on Emmett's Fight

I am so grateful and honored to write a guest post on the Safe Kids USA blog today! I appreciate their partnership in helping our family share Emmett's story and to hopefully prevent another child from suffering from ingesting a button battery. By educating parent's and caregiver's about this hidden danger, we hope that they will take action and secure electronic devices that house these tiny batteries. Thank you to all of those who help us fight along with Emmett in saving other children's lives!

Go Emmett, Go!!!

 To view the Safe Kids USA Blog: Emmett's Fight

Daily life!

Start off by back tracking through the past month. As I am sure you all can relate, life just flies by and I am grateful for the chance to blog. It helps me to stop, reflect and make an account of the joys that my daily life brings.

In July, the Rauch family set off on a voyage to beautiful San Diego, CA. The road trip is only about 6 hours from Phoenix to San Diego. It is well worth the drive to enjoy the 70 degree weather and sit on the beach. We spent our time going on walks at the park, rented a surrey bike and rode around Mission Beach, enjoyed the sand at the coast of Del Mar. Made Ethan's dreams come true by spending a day at Legoland (I went through an entire bottle of hand sanitizer on the boys hands). 

Emmett is on strict RSV restriction's during the fall, winter and spring months, high cold and flu seasons. He is not able to go into the grocery store or large populated areas, due to the high risk of catching a respiratory infection. If Emmett caught a respiratory infection such as a cold or flu he would end up in the hospital. During the summer months we are able to be a little more free about where Emmett is able to go.

This was Emmett's first real vacation and Ethan's first true entire family vacation. Ethan was so excited to be going on a trip with Emmett. It was exactly what all needed, escape from daily life, cool weather, no doctor's appointments or scheduling, no nursing care. It was just the 4 of us! (by the way, to our nurses we love you)

Near the end of our trip, we headed up the coast to visit my sister, Liz and her beautiful family. I had to share this picture. My nephew Benny is on the left, Ethan and then Emmett. Clearly Benny didn't get whatever joke the two boys were cracking. Pure laughter! This picture still makes me giggle.

After many hugs and kisses and a good bye to my sister, we headed east to Temecula to visit Michael's brother and his wonderful family. We walked around the down town streets and stopped off at the candy shop. Ethan, his cousin Nicolas and Michael. 

Ethan love's his cousin's.

Emmett was kindly entertained by is adorable cousin's Rachel and Brenna, while receiving his twice daily CPT vest treatment.

After coming home and adjusting to the lovely 115 degree weather that Phoenix so kindly greeted us with, we celebrated Michael's birthday. Ethan is my su-chef, he enjoys helping me around the kitchen. We wanted to make his daddy some cupcakes. They were delicious!!!

I have tried to create a schedule for the boys during the summer months. Each day the boys can pick two craft activities they would like to do. The most popular in our home is painting with water color's.

We are so blessed to have a terrific public library with a great state of the art children's center. The library is filled with books, audio CD's, movies, computers, games, developmental toys, train set and much more. The boys love to spend a few hours each week exploring the library.

I sure enjoy my life with my beautiful Family! I thank my Father in Heaven for these wonderful moments.

Emmett sporting a new Orthopedic Look: SPIO Vest and SMO's

No, Emmett is not prepping for Jazzercize ... He is sporting his new orthopedic SPIO (stabilizing pressure input orthosis) vest. The purpose is to provide deep sensory pressure. Emmett has been hospitalized for almost 50% of his little life. Bed bound, Emmett has been deprived of crucial gross motor and sensory development.

 I am a beginning student and am soaking in all of the information I can about sensory development.  Basically the body has 5 senses. The sensory development or sensory processing is how the bodies nervous system accepts the five senses and its response to them motor or behaviorally. Emmett's main sensory concern is the proprioceptive nerve receptors, his body has a hard time understanding its balance in its surroundings.

The SPIO vest snugs him tightly to give him a secure feeling, kind of like a leotard. He loves it! Some day's I can hardly get it off of him. 

To learn more I enjoy reading abilitypath.org

The new kicks!!!

Emmett is the cool kid on the block, rock'in his DC's. The brand DC creates their shoes wide and deep enough to house the orthotic's SMO's (Supra-Malleolar Orthosis).

 The SMO is used to help correct children with low muscle tone in the foot and ankle. Again, Emmett was in a hospital bed during a crucial gross motor development time. During the first and second year the body grows and develops strength throughout the muscles, tissues, bones and nerves. Emmett has no arch and walks on the sides of his feet.  He also externally rotates which puts negative pressure on his hips and back. His wonderful physical therapist, miss Jen, suggested due to all of Emmett's abdominal surgeries, he is overcompensating by using muscles that don't require him to strain his stomach muscles. Amazing how the body so interconnected. Our goal is to help Emmett strengthen and feel secure about using his little tummy muscles. To do this we are starting with his feet.

Emmett LOVE"s his new footwear. Every morning, he ventures off into his room, fetches his orthotic's and tennis shoes and asks for me to put them on. I have never seen Emmett run so fast and with so much control. It is incredible!

Meet miss Barb Boutin, Orthotic Specialist and co-owner of Orthotic Specialists of Arizona. Barb is the most kind and caring individual. She is the creator of Emmett's SMO's and also recommended along with miss Jen (physical therapist), for Emmett to be treated with the SPIO vest. 

Emmett is on a roll and we are now taking the necessary steps to help enable Emmett to become a track star someday, even if the race is against his brother Ethan in our back yard:)

Go Emmett, Go!

Emmett's Story (Video)

We at Emmett's Fight are pleased to be partnered up with the Battery Controlled, an awareness campaign, dedicated to preventing button battery ingestion.Together we are working hard to help prevent and protect another child from accidently swallowing a button battery. Almost 2 years ago, Emmett became a victim of ingesting a button battery, a nearly fatal accident. As Emmett's parent's, Michael and I are committed to sharing Emmett's story in hope to bring awareness to families all over the world. Please share this video and help us save another child's life!

Go Emmett, Go!

Thank you  Battery Controlled for creating this video!

Devin's Eagle Project...

A few months ago I wrote about a fundraising breakfast organized by a 13 year old boy, Devin. Devin and his family are friends of our's from church. 

Devin is a Boy Scout and is working hard to become and Eagle Scout, the highest rank in the Boy Scouts of America program. To earn this award,  Devin needed to complete a certain number of  hours of service in his community. Devin contacted us and shared that he wanted to focus his eagle project to benefit Phoenix Children's Hospital (PCH) in honor of Emmett.

Our hearts were deeply touched.

Devin hosted a fundraising pancake breakfast. The turn out was great and those who came to show there support, donated generously.

With all of the generous proceeds, Devin was able to purchase or make:

Legos - 37 packs

Dolls - 23

Stuffed balls - 44

 Finger Puppets in Space Ships - 26

 Blankets - 99 (All Sizes)

 Bead Kits - 7

 Rattles - 75

All for children who are being treated at Phoenix Children's Hospital. 

Devin and his mother, Barb, made Ethan and Emmett to adorable blanket's.  Ethan's blanket has "Darth Vader" from "Star Wars" and Emmett's blanket has "Lightning McQueen" from the movie "Car's". Both the boys favorite!

Once all of the supplies were collected and gathered. We accompanied Devin and his parent's to the hospital to deliver the donations.

Michael and I were also able to show Devin and his family around Emmett's old stomping grounds, the Pediatric ICU (PICU).

Devin and his mom, Barb, in one of the room's Emmett was treated in in the PICU.

We are so grateful for Devin and his great example and kindness towards the member's of our community. Thank you so very much. While Emmett was being treated at PCH, we received gifts, similar to those donated by Devin. A simple thing such as a gift can make a difference in a child's day while living in a hospital. Thank you!

Walmart, PCH and Emmett's Fight Working Together for a Great Cause. Part III

The third and final chapter to our Walmart, Phoenix Children's Hospital and Emmett's Fight outreach. On June 9th, our family attended a Black Tie Event hosted by Walmart in honor of Phoenix Children's Hospital. We pulled out our fancy shoes and purchased two adorable 5 piece suits for the boys. 

The gathering consisted of many local and national vendor's of Walmart coming together to donated to a wonderful hospital for children.

Michael and I were asked to speak to the audience that evening. I shared Emmett's story and encouraged those who were in attendance to help spread the awareness of the danger's of button battery ingestion. Michael noted our families appreciation for Phoenix Children's Hospital in caring for our Emmett.

Ethan and Michael 

Mr Emmett 

Emmett and Miss Arizona, Jennifer Sedler and Miss Maricopa

While enjoying the delicious dinner of Prime Rib and Fettuccine Alfredo, Entende a local rock trio, shared their talent. We have become huge fans ever since. Entende shared Emmett's story and the awareness of button battery ingestion on their Facebook page and encouraged their follower's to take action. Thank you Entende!

Ethan and Emmett were very well behaved most of the evening. By 9pm however, the shoes came off and there was no stopping the wrestling. Boys will be boys.

Michael and I are so grateful for Walmart and Phoenix Children's Hospital for helping us share Emmett's story and spread the awareness!