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.

Her strength amazes me – #eosinophilicesophagitis

I would be lying if I said that seeing pictures of families having cookouts and roasting marshmallows by the campfire did not make me sad. Friends, I started crying this weekend when I saw a family enjoying s’mores together. My heart just hurts for my L. There are moments that I am weak and this weekend was one of those moments. God gives us strength and I know he gives L strength to continue on her journey each day. Food is all around us and in our faces everywhere we go. As L’s mom, I try to make her comfortable while she is drinking her formula. At 12 years old, we get questions of why she is drinking formula or only eating pears and sweet potatoes. For people that do not know about her disease, their jaw drops every single time when I explain about the disease. The next phrase out of their mouths is “How does she do it?” L answers with the same answer, God gives her strength. Oh tears, friends.

We do not leave the house without her backpack and in that backpack, I ensure she has her formula, pears and sweet potatoes. Also, I include the elemental candy she can have which is 100% pure sugar. People have made comments of why we let her have so much sugar, but why wouldn’t we?

L with animalsL’s happy place right now is with animals. The stress and anxiety goes out the door when we see L smile ear to ear when she is surrounded by animals. This girl has a way with animals.

Recently, we were visiting my aunt’s farm and the donkeys just proceeded to come right up to L. It was a priceless scene. In that moment, we did not think about her eosinophilic esophagitis, all the medicines that she needs to take, or her sugar getting too low. It was a moment of our girl having fun and enjoying being a child. This is how life should be for her. My goal is to try and not let her rare disease take away her joy. God has big plans for our girl and we are going to be cheering her on every step of the way. L and I sat on the couch and cried together earlier this week because she said she was thankful God gave her this disease as it has made her stronger in her faith. She mentioned, if God only allows her to have two safe foods, she will be grateful for those two foods. This girl is simply amazing. Her strength will be a huge testament to others. If I’m having a bad day, I just think about L and her living her days with very little food options. Just look at her smile on her face? That is a face of perseverance and strength.

With all the pollen in our area, it has wrecked havoc on her little body. We are not able to do a food trial right now but hoping in the next few days, the pollen counts will drop and we can start another food trial. Failing a food trial is so hard on her as it brings all her symptoms back and takes a toll on her day-to-day activities. We will never stop praying for a cure.

L, you are my hero!

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