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.

Gluten-Free and Dairy-Free No Bake Energy Bites

Ever since L’s diagnosis, we say no to processed foods. We enjoy knowing what is in our foods that we eat. We are all healthier and living a more natural lifestyle. Each week, I love making the no bake energy bites for a quick snack during the day. They are delicious and so easy to make.

No Bake Energy Bites

Ingredients

1 cup 100% dry oats (gluten allergy or intolerance ensure it is gluten free oats)
1/2 cup peanut butter
1/3 cup honey
1/2 cup ground flaxseed

Directions

– Add all ingredients to a bowl and mix well. Put the bowl in the fridge for at least 30 minutes.
– After time in the fridge, take a spoon and scoop enough to make a ball in your hand.
– I was able to make 20 balls.
– Store in the fridge in an airtight container.

Enjoy. Your entire family will enjoy these bites. You will be making them each week!

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.

Frugal Deals at Walgreens with Groupon

Did you know Groupon has online coupon codes? I did not realize this until recently when I was searching for an online coupon code for Walgreens. Walgreens is my go to place to have pictures printed and/or picture crafts. One of the main reasons I love using Walgreens is you can order and have someone else pick up the finished product.

L loves to design and draw on the computer. She wanted to surprise her BFF with a gift. Her creativity sparked a beautiful image. We uploaded to Walgreens, searched Groupon for a coupon code, selected the Walgreens closest to their house, and submitted payment. Once the photo project was completed at Walgreens, an email was sent to alert us the artwork was ready for pickup.

Walgreens Wood Panel Picture

Isn’t it beautiful and so creative? Needless to say, L’s BFF absolutely loved the artwork.

walgreensWalgreens has great products to put memories into keepsake items. Their Groupon Coupon page always has coupon codes so you do not have to pay full price for the items. My rule of thumb is to never hit submit until I have checked for an online coupon code. The items make great presents and you can save on delivery charges by sending the product to the nearest Walgreens of your special recipient.

Disclosure: This is a sponsored post. All thoughts and opinions are of my own. We love Walgreens and coupons!

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