We Need a Cure!

Mom and L

What if your child could only get their nutrition from a feeding tube or by drinking a prescription formula? This is a very thought-provoking question. You probably have never been asked this question before, but I’m asking you since this week is National Eosinophilic Awareness Week.

After years of going to several different doctors, L was finally diagnosed early last year with a rare disease called Eosinophilic EsophagitisAccording to the American Academy of Allergy Asthma & Immunology, Eosinophilic Esophagitis is a recognized chronic allergic/immune condition. A  person with EoE will have inflammation of the esophagus. The esophagus is the tube that sends food from the mouth to the stomach. EoE is considered to be a chronic condition and is not outgrown. That’s why why we need a cure for our L and the many others that suffer from this horrific disease.  Children often have recurring abdominal pain, trouble swallowing or vomiting. The esophagus can narrow to the point that food gets stuck. This is called food impaction and it is a medical emergency. We have been in the emergency room several times with L because of food impactions before we took food completely out of her diet and put her on a prescription formula.

L does food trials and currently only has two safe foods, pears and sweet potatoes. Can you imagine waking up in the morning and only being able to eat the two same foods and formula? Can you imagine going to a party and watching everyone at food around you? Can you imagine walking into a restaurant and seeing all these people eat around you but you know that you are not able to eat that food? Can you imagine kids all around eating candy, ice cream cones, and/or juice but you can’t? It’s hard to imagine life like this but it is our L’s reality. We need a cure.

The CURED Foundation is a not for profit foundation dedicated to those suffering from Eosinophilic Gastrointestinal Diseases (EGID), including eosinophilic esophagitis (EoE), eosinophilic gastritis (EG), eosinophilic colitis (EC) and other eosinophilic disorders. CURED is committed to raising substantial funding to aid in research, advocating on behalf of EGID patients and their families, and working to educate and increase awareness about this complex group of diseases. 100% of  every donation to the CURED Foundation goes straight to research. Will you help spread the word and/or donate so we can see a CURE in our near future. Our family is begging and pleading for you to take this serious.

Thank you for hearing us out. My L is the strongest person I have ever met. She truly is my hero!

CARS 3 “Road to the Races” Tour Rolls into Charlotte

Do you have any CARS fans in your house? We sure do in our house. The girls, Jacka, and Gray Baby all have a joint love for Disney World and CARS. Go ahead and gather all your CARS fans because you will not want to miss this FREE event at Charlotte Motor Speedway this week.

CARS 3, the newest film in the smash-hit franchise, is hitting the road this Spring with a “Road to the Races” tour in select cities across the country. Life-size, character look-alikes of five-time Piston-Cup champion Lightening McQueen (voice of Owen Wilson), tech-savvy Cruz Ramirez (voice of (voice of Cristela Alonzo), and the sleek next-gen racer Jackson Storm (voice of Armie Hammer) will be rolling into the Charlotte Motor Speedway to celebrate the new movie, which opens in theatres nationwide on June 16, 2017. With Charlotte’s rich history of racing, there is no better place to gear up for the release of CARS 3 than at the Charlotte Motor Speedway.

CARS 3 “Road to the Races” tour is free and open to the public! Fans will have the opportunity to:

– Take photos with the “stars” of the movie – Lightning McQueen, Cruz Ramirez and Jackson Strong

– Participate in a host of family-friendly activities

– Race pit crew tire-changing simulation

– Sample high-octane smoothies

– Interactive play area featuring locations from the movie

– Get a first look of the new movie in the Cinetransformer Mobile Movie Theater.

Activities:

Alamo Rent A Car is hosting a street art booth and will bring “Cars 3” to life with a giant coloring mural featuring Lightning McQueen and friends, along with a color pencil pack souvenir. Owned and operated by Enterprise Holdings, Alamo Rent A Car offers low rental rates and a hassle-free customer experience at the most popular travel destinations around the world.

Coppertone® is creating a racer pit crew that encourages visitors to take part in a tire-changing activity and photo-sharing opportunity. A leader in the sun care industry, Coppertone is made by Bayer HealthCare, LLC.

Crest® and Oral-B® celebrate the Road to the Races tour, providing fans with an opportunity to create a digital postcard with Lightning McQueen and get “Cars”-themed oral care products. Crest and Oral-B are the first step to enjoying a lifetime of healthy smiles.

Dole®, the leader in fresh, quality produce, invites visitors to fuel up and recharge their batteries, sample high-octane fruit and vegetable smoothies, collect “Cars 3”-inspired recipes and discover how Dole and Disney are working together to make healthy living fun and easy for families. To see more of Dole’s exciting promotions around summer family fun, visit www.dole.com/Cars3.

Mattel presents an interactive play area, which sends Lightning McQueen and other racers down the gravity drop and launches them into action in new play sets that feature locations from the movie. Also on display will be a collection of die cast racers from past and present. Mattel is the leading global childhood development and play company.

Again, fans will be able to catch a sneak peek of the movie in the Cinetransformer Mobile Movie Theater. Visitors will also be able to take photos with the life-size character cars. In addition, the sports national youth program NASCAR Acceleration Nation will display the science behind NASCAR racing, and elements from the NASCAR Hall of Fame will allow attendees to get up close and personal with the history of NASCAR.

Cars_3_Flyer_FINAL_Charlotte

Frozen Summer Games Coming to Disney’s Blizzard Beach Water Park

Frozen Games at Blizzard Beach

We will be attending BlogHer 2017 in June and our plans are to visit one of Disney’s water parks. I just read the news about Frozen’s Summer Games returning to Blizzard Beach this summer.

Following the success of the inaugural “Frozen” Summer Games last year, guests visiting Blizzard Beach can once again join Team Kristoff or Team Olaf to participate in a variety of activities, from Ice Pail Relays and a Snowball Toss to Ski Pole Limbo and Slide Races. It’s going to be a blast!

With crafts, games and a DJ spinning some up-tempo tunes throughout the day, the “Frozen” Summer Games are sure to be a major highlight of your day at Blizzard Beach this summer.

And for the first time in forever, you will be able to meet and take photos with Kristoff and Olaf at Blizzard Beach! Either Kristoff or Olaf will be at a designated character greeting location at the park, where you can snap photos of each “Frozen” star and let them know which team you chose to play for.

This may have just solidified our decision of  our water park choice. The entire family loves Disney’s Frozen!

Great Customer Service is not Dead! {Starbucks}

Customer service can either ruin your thoughts about a business or win you over. This weekend, Starbucks won us over once again. As you know, L was trialing sweet potatoes. The great news, L has passed sweet potatoes and she is currently on day 10 of all natural chicken. We continue to give God all the glory. Our sweet girl now has two safe foods, pears and sweet potatoes. Friends, this is huge! This year is going so much better than last year. Last year was the hardest year of my life, and I cannot even imagine how L feels about last year. I gained more gray hairs, for sure.

During food trials, L has to have 100% of that food with no added ingredients unless it is an oil. During the sweet potato trial, L was in line with me at Starbucks. We both found the One Potato, Two Potato sweet potato chips brand on the shelf. The Starbucks barista told me she didn’t know of any other stores that carried this brand. She was only familiar with Starbucks carrying the product. Every Starbucks we would visit, we would buy all the bags on the shelf. This past weekend, we were in Pennsylvania and I was telling the barista at this specific Starbucks and L’s disease. She immediately went to the back and brought all the bags the store had for us.

Big Sis holding the chips

Big Sis holding the chips

This warmed our hearts so much. L grinned ear to ear when she heard this barista did this all on her own. Not many people understand L’s disease and her huge limitations on food. These sweet potato chips rock her world. Believe me, we have tried many different brands but nothing compares to the One Potato, Two Potato brand. The chips can be bought online but shipping is very expensive, so hence the reason we try to buy in store.

The art of customer service is not lost. All the baristas in this store were so kind and compassionate. You could tell they all really cared about L’s disease. Thank you baristas in Carlisle, PA. You made this family’s day!

My girls keep me sane!

Life is in the fast lane. As of yesterday, I have one month to finish this semester. My girls see me come home from work, do the tasks that need to be completed on the home front, and then sit down to do homework. They never complain. I worry and feel guilty about the time that I spend on homework, then I look at my girls and they open their arms to give me the biggest hug. There are moments that tears fill my eyes thinking about missing time with them, but then I take the time to remind them why mom went back to school for another degree. Both girls assure me they understand and will always love me. It is at those moments, I know I can stay sane and finish this last year of school.

It is my priority to make mom and daughter time with each of them. This includes taking our dogs for walks, heading to Starbucks for a coffee treat, and watching YouTube videos. Unfortunately, there can be times when they ask me something while I am doing homework, but they have to repeat it to me because my mind was wrapped about homework. The girls never mention or get aggravated about the repeating sentences. They keep me sane.

Mom and MMom and L

The girls get me and are my biggest encouragement to continue on this path. God sure has blessed me with two daughters and I will never take that for advantage. Easter break is going to be good for family time, celebrating He is Risen, and welcoming a new family member. We are so excited to share with you! 🙂

Related Posts with Thumbnails
`Michael Kors Factory Outlet`Michael Kors outlet Online`Michael Kors handbags on sale` Cheap Michael Kors Bags` Michael Kors Hamilton Bags` Michael Kors Outlet Online` Michael Kors handbags outlet` Kors handbags outlet