Officially Weaned Off Of Steroids #EosinophilicEsophagitis

Mom and LI wanted to update on L’s latest journey with living with eosinophilic esophagitis. From the last blog post, you know we were trying foods that eliminated the top 8. Unfortunately, after 48 hours, we ended up in the emergency room. She had a severe reaction. It was at this time, we started questioning if we were under the right care for L. After our research and talking with other families that deal with this disease, we switched to a hospital that is experienced in treating this disease.

This new hospital and team of doctors are amazing. They care about L and stay in contact with us. This is a hard disease to navigate and we need doctors that are going to walk this journey with us. It was decided that L would go on a new steroid and 100% Neocate Splash formula, no other foods or beverages. After 6 weeks, L is doing amazing with no reactions or symptoms. As of last Friday, we have weaned L off her steroids and all other medicines. Isn’t this great news?

Now, we let her body heal for three weeks before her next endoscopy and biopsies on June 30th. If all looks well during the endoscopy and biopsies, L will be able to do her first single food trial. She is hoping for potatoes but we will have to see what the allergist and GI doctor says for her to try. The allergist said they go on experience of what foods are usually not a trigger with other patients. This disease is very unique to each kid, so it is a trial and error method to figure out safe foods. We will try each food for six weeks and then do an endoscopy to see if this will be a safe food for L.

We will continue to keep you all posted in hopes L’s journey will be able to help others. Our family dynamics have changed so much since L cannot have any food. Obviously, her feelings matter to us and we want to be sensitive to doing activities with food. You don’t realize how much life in general revolves around food until your child cannot eat food.

My husband and I both continuously encourage L, praise her, and lift her up on a daily basis. She is a very strong and brave girl. Positive thoughts, lots of prayers and encouragement have gotten her through these last few months. We are in this with her!

Pray with us for good news on June 30th! Thank you!

Family Reviews the 2016 Toyota Rav4 Hybrid

On our most recent road trip to Disney World, we had the pleasure of test driving our very first hybrid vehicle, 2016 Toyota Rav4 Hybrid. Toyota graciously partnered with us on this road trip. All thoughts and opinions are of our own.

Click on the below picture to get a small glimpse into our road trip.

2016 Toyota Rav 4 Review

This was a sweet ride. We are a family of four and had plenty of leg room for us all. The only downside was all of our luggage and souvenirs. Since we were gone a total of 8 days and had all the medical things needed for my youngest daughter, we did run out of room in the back. My husband knows how to organize, so he did get us back home with everything.

As you see in the video, the interior is very elegant. The brown and black leather really makes this vehicle feel very upscale without the exhorbiant price. My husband and I both enjoyed the dual zone automatic climate control. I freeze all the time, my husband always gets hot. The dual zone will eliminate any fighting over the temperature. The heated seats were great as well when we were on the road early morning. My husband did like the feel of the leather steering wheel. Again, this gave luxurious feeling without the hefty price.

When you are in a vehicle for a 10 hour road trip, radio sound is a big key to a positive road trip. We enjoyed the Entune Premium Audio with Integrated Navigation during the trip. Our family did our own sing-along to the 70s and 80s music.

The gas mileage was amazing. We averaged 33 mpg the entire trip. The RAV4 Hybrid adds extra thrills with 194 net horsepower and outstanding acceleration.

Toyota Rav 4 Hybrid Battery

While my husband was driving, I would check out the apps available as you can see above. It was interesting to see when we were running on battery power. When we were running on battery power, there would be no motor noise. As you are driving, you can leave this screen on so the energy monitor can indicate the operation of the gas engine, electric motor and hybrid battery. It provides real-time information showing how power is being used, and even how the battery is being charged. My husband, the auto geek, loved seeing the real-time information.

This Rav4 is a 2.5L, 4-cylinder. Check out the full specs on the Toyota Hybrid website.

Toyota, you have done an amazing job! A vehicle for the future for sure coupled with great comfort.

Moms…. You are not alone!

This year has been hard. I’m not going to sugar coat it, but just be real. The many doctor visits to finally lead us to a diagnosis for L, the many road trips to the hospital, the many phone calls to get help for our daughter, and include the many hours of research to ensure we are doing the best medical route for L, has brought me to tears. My husband is a strong man and I am grateful he has been right by my side. Moms, when life throws many curve balls your way, please know, you are not alone!

Moms from all around the country have uplifted L and I, have prayed for us, given us support on which medical journey to take, and most of all just been there for us with encouraging words.

There have been many times that friends have asked how can they help? My main answer is I just want L to be able to eat again, be healthy! Take a minute and watch this video from Pfizer Healthcare. See if you can relate.

Time and time again, we put our children first because we just want to meet their every need. Our kids are blessings to us, just as we are blessings to them. Growing up, I always wanted to be a mother and now I am able to be mom to M and L. Sick just got real. ™. Even though bad days are evident, we can always rest assure that we are not on this motherhood journey alone.

This past week, we arrived home from the happiest place on Earth. Our L has had very few smiles over the last few months until we planted our feet on the grounds of Walt Disney World. The smiles were able to wipe the worries of our rare disease away for a few days. These days will be cherished forever.

M and L Disney World

We have partnered with Pfizer Healthcare to award one mom a $25 Visa Gift Card. Please leave a comment below on how you can use this card to pamper you and/or your family! Good luck! Giveaway ends on May 20, 2016 at 11:59pm EST.

Disclosure: This is a sponsored post with Pfizer Healthcare. All thoughts and opinions are of our own.

Medical Grants Are Available for Children in North Carolina #UHCCF

As you know, my youngest daughter, L, is going through a health journey since being diagnosed with a rare disease called eosinophilic esophagitis.

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We are grateful for insurance since she has several appointments and medical procedures along with medicines and formula. However, sometimes insurance companies will not pay for specific needs. I am eager to let you know about the UnitedHealthcare Children’s Foundation. The foundation is seeking grant applications from North Carolina families in need of financial assistance to help pay for their child’s health care treatments, services or equipment not covered, or not fully covered, by their commercial health insurance plan. Qualifying families can receive up to $5,000 per grant with a lifetime maximum of $10,000 per child to help pay for medical services and equipment such as physical, occupational and speech therapy, counseling services, surgeries, prescriptions, wheelchairs, orthotics, eyeglasses and hearing aids.

To be eligible for a grant, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States and have a commercial health insurance plan. Grants are available for medical expenses families have incurred 60 days prior to the date of application as well as for ongoing and future medical needs. Families do not need to have insurance through UnitedHealthcare to be eligible.

Parents or legal guardians may apply for grants at www.UHCCF.org, and there is no application deadline.

Since 2007, UHCCF has awarded over 10,000 grants valued at more than $29 million to children and their families across the United States for treatments associated with medical conditions such as cancer, spina bifida, muscular dystrophy, diabetes, hearing loss, autism, cystic fibrosis, Down syndrome, ADHD and cerebral palsy.

In North Carolina, UHCCF awarded more than 325 grants since 2011 and is hoping many more local families apply this year.

“Many families across the United States are facing a variety of financial challenges, including child-related medical costs. The UnitedHealthcare Children’s Foundation medical grants will help families access and pay for care that will improve their child’s health,” said UHCCF President Matt Peterson. “We recently awarded our 10,000th child medical grant and are seeking to help thousands of more families. We encourage everyone to spread the word to friends, family members and colleagues that child medical grants are available from the UnitedHealthcare Children’s Foundation.”

For more information about UHCCF, visit www.UHCCF.org.

Disclosure: This is a sponsored post but a topic that is very dear to our hearts. All thoughts and opinions are of our own.

Adventures in Dollywood! {Did we get lost?}

Dollywood Travel Review

We had so much fun at Dollywood last week. My family has season passes and we were able to bring a friend. Of course I chose my parents and brother since they have not been in almost 20 years. Check out our adventures and stay tuned this week as we daily vlog our adventures at Disney World!

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