UPDATE: We have decided to go to Cincinnati, Ohio #blamemom

Will this be a turning point in L’s treatment plan for her eosinophilic esophagitis? As you all know, a rare disease decided to take us by storm in early 2016. My eyes were steadfast on the operating room doors for what seemed like hours. In reality, the time past had only been 55 minutes. When the doctor came through the operating room doors, her eyes caught my eyes, and I knew by her facial expression, the dreaded news was about to be spilled. The diagnosis from the doctor was the worst case scenario, eosinophilic esophagitis. This disease has wreaked havoc on L’s body for over a year and a half now. Many tears have been shed in hospitals, doctor offices and on the sheets of my daughter’s bed. As a parent, all I want to do is take this disease away from my daughter. My cries to the Lord have included to let my body fight this illness and let my daughter enjoy her childhood.

During this past summer, L was going backward with her symptoms instead of making great strides in a positive direction. As a family, we were scratching our heads on what should we do with L’s treatment. After a discouraging weekend at the end of this past July, I recommended to my husband and daughters to go on a very short hike to Rough Ridge on the Blue Ridge Parkway with me. We could leave the disease world behind for a few hours, and enjoy God’s beautiful mother nature. While researching online the best path to take to Rough Ridge, I found an excellent location we could park our car and start hiking on the trail to Rough Ridge. The website stated this place would only be a 1/5 mile walk up to Rough Ridge. Meanwhile, the location I thought was a correct spot ended up taking us 1.5 hours to get to the Rough Ridge overlook. This trail had us climbing through trees and atop rocks, but we finally made it to the most amazing views. L was not happy with me taking the wrong trail and vented her frustration along with creating her hashtag #blamemom. After spending time enjoying the stunning views, we begin the trek back down the trail to find our car. As we are walking down the rocky path, I hear, someone calling out my name Jennifer. Immediately my eyes focus on this woman on the trail, and I realize it was a friend from my Facebook page! Her precious son has eosinophilic esophagitis and she has been a huge help to L and me through this journey. We have only talked on Facebook and never met in person. Time stood still as we stopped in the middle of the trail to talk with her and she persuaded us to rethink L’s treatment. Her conversation filled with reasoning on why we should take L to Cincinnati Children’s Hospital.  This clinic is the leading research hospital for all of the eosinophilic diseases. Carol’s credibility in recommending the clinic to us is very high as her son has been battling eosinophilic esophagitis for four years. Carol was such an encouragement to our entire family on the trail that day, and since she lives 7 hours away, it was God’s divine intervention, that she happened to be in on the same trail as us at the same time. My oldest daughter stated, “Mom there is a reason we took the long hike as God wanted us to see Carol.” If we had taken the 1/5 mile trail, chances are our families would not have met.

We are looking forward to hearing new treatment options next month for L and speaking directly with researchers to see how close we are to a cure.

Having Fun at Walt Disney World’s Blizzard Beach

This summer we finally visited our first Disney Water Park, Blizzard Beach! This family event was such a beautiful day for L and little Avery enjoyed surprising L with a treat. You will have to see the cuteness in our vlog. At the end of the vlog, we share a place at Disney Springs that has an icee that elemental patients can enjoy. We may or may not have let L get this particular icee every night.

We are changing treatment plans for L’s Eosinophilic Esophagitis

L - July 2017After lots of prayers and discussions, we have decided to change treatment plans for our L. As you know, her original diagnosis came in early 2016. We had never heard of the words eosinophilic esophagitis. The only thing we knew was our daughter was really sick and losing weight very fast which led to her being near failure to thrive. Fast forward 17 months later, and L has gained 31 pounds. Praise the Lord! She looks so healthy. She has been on an elemental formula diet during this entire time and drinks approximately 10 little boxes of Neocate Splash. The Neocate is providing the nutrition she needs but L is really wanting to eat real food. She has managed to only gain two safe foods during the last year and a half, pears and sweet potatoes. Unfortunately, L has so many regular food and environmental allergies, that we are not making any progress with food trials. After meeting with her team last week at the Children’s hospital, they all agreed it was time to change routes.

We have decided to start L on a daily steroid slurry routine.  She started yesterday and will be taking the slurry twice a day. We have to make the slurry each time with pulmicort respules and packets of stevia sugar. This will coat her esophagus in hopes that she can pass more food trials. I did not want to go the steroid route, but L’s mental health is very important to us. Can you imagine not eating food when everyone around you can eat food? Our society revolves around food so much. She deserves this chance. The pros outweigh the cons of steroids.

She will be introducing a new food in two weeks, then another food two weeks later, and then another food two weeks after that. After that time, she will be scheduled for a scope day at the Children’s Hospital to see if the steroids are keeping the eosinophils away. We are praying this steroid will be the answer for our L. We will never quit praying for a cure each night.

L will continue to drink her prescription formula, Neocate, but we are hoping she will be able to reduce her formula intake each day. As always, we are here to share L’s journey in hopes we can help other families. Please stay tuned for progress updates.

Congress: Please Read – My Daughter has a Rare Disease

L - Mountains

Do you see the beautiful girl in this picture? This girl is my daughter and my hero. She has been living with a rare disease and went undiagnosed for many years. Finally, she was properly diagnosed with Eosinophilic Esophagitis in early 2016. Food is her enemy and she has to survive by drinking a prescription formula, Neocate Splash. This formula keeps her alive and yet insurance companies are choosing to not cover this medical care necessity. She announced to me last week that she was afraid to die if insurance decided not to cover her formula. My husband and I will do everything in our power and might to ensure L has her formula. There are many families all across the United States facing this same struggle with trying to advocate for insurance to cover prescribed formula. Please have a heart and do what is best for all these families. Speak up and vote to pass bill H.R.2587 – Medical Nutrition Equity Act of 2017.

Why do we need this passed? To provide for the coverage of medically necessary food and vitamins for digestive and inherited metabolic disorders under Federal health programs and private health insurance, and for other purposes.

This needs to be a law in every state so insurance companies can quit denying our children the medical treatment they need to SURVIVE!

Friends, we are asking you to please contact your Representatives in your state and encourage their co-sponsorship of this important legislation, too! To find out who represents you, visit https://www.house.gov/representatives/find/.

Together we can make a difference and advocate for this bill to be passed!

Wyndham Disney Springs Resort Hotel Review

Wyndham Disney Springs Resort Hotel

Our view was amazing! Who wouldn’t want this view for their vacation? Re-entry was hard after we returned home. Our Wyndham Garden Lake Buena Vista Disney Springs vacation left such lasting memories in our heart. It was painful to leave. L said she did not think about her EoE (eosinophilic esophagitis) one time while we were on vacation. This is huge, friends. The hotel was so nice to let me heat her sweet potatoes in their microwave in the lobby and the mini-fridge in the rooms had a freezer in which we could re-freeze her ice packs each night to ensure we could keep her formula cold while in the parks.

L put together this video of our stay at the hotel. Hope you will enjoy!

Last year, we put together another video that shows a different part of the hotel.

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