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!

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!

We have exciting news!

Jen from One Moms World

This was truly the best weekend ever. We were surrounded in love with our family and enjoyed celebrating a big event. L and I will be releasing an update on our YouTube channel on Tuesday to tell you the big news. We hope you are subscribed to our channel so you will get the notification when the video goes live. God is so good and we are giving Him the glory for this great news!

Enjoy a Happy Halloween {Teal Pumpkin Project}

The day has come where many kids all across the country will visit their neighbors to say “trick-or-treat” and get a sweet treat in return. Kids will be jumping, skipping, running, and walking with no worries in the world to see how many treats will fill their bucket.

teal-pumpkin-project-omw

There will be also be kids that want to skip or run to their neighbor’s houses but are scared of not being able to get a treat. These kids have food allergies. They are not being picky or selfish, they are just wanting to feel “normal” and enjoy an activity like other kids. L falls into this category. Ever since she was diagnosed earlier this year with eosinophilic esophagitis, she has had a hard time going around other kids because she feels like she is not “normal.” We are working through this issue. A couple of months ago, we were in Michaels Craft Store and saw a teal pumpkin. As soon as we got home, we had to google about the teal pumpkin project. L explains this project in her short video.

Isn’t this a great idea? All because a fellow allergy mom wanted her kids to enjoy Halloween. The Teal Pumpkin Project was inspired by a local awareness activity run by the Food Allergy Community of East Tennessee (FACET) and launched as a national campaign by FARE in 2014.

We are hoping to find lots of teal pumpkins during our trick-or-treating outing. We wish you all a wonderful, happy, and safe Halloween!

Raising Awareness for the Teal Pumpkin Project

Teal Pumpkin for Halloween

As my readers know, we have been battling a medical journey this year with our L. Currently, my daughter has no safe foods so going into the holiday season, we will need to get creative. We received a sign of hope as we were in Michaels this past weekend. There was a poster about the Teal Pumpkin Project. I immediately had to take a picture and send to my daughter.

Once I arrived at home, I immediately had to google about the project. From the Food Allergy website, the Teal Pumpkin Project was inspired by a local awareness activity run by the Food Allergy Community of East Tennessee (FACET) and launched as a national campaign by FARE in 2014.

L has many regular food allergies, including allergies that will produce an anaphylactic reaction, besides just her eosinophilic esophagitis allergies. Food allergies are a life-altering and potentially life-threatening disease, and a growing public health issue. Did you know, in the U.S., one in 13 children has a food allergy? For these children, even a tiny amount of their allergen has the potential to cause a severe reaction.

These kids already alter their life so much. Let’s all come together this Halloween and let them have an amazing evening with their friends and family. Participating is simple. Pick up some inexpensive toys, and place a teal pumpkin and/or a free printable sign from FARE outside your home to show that you have non-food treats to hand out. Supporting the Teal Pumpkin Project is a simple gesture that can have a big impact.

For more information, please visit the Teal Pumpkin Project website. Will you join in with us to help raise awareness?

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