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!

Great Customer Service is not Dead! {Starbucks}

Customer service can either ruin your thoughts about a business or win you over. This weekend, Starbucks won us over once again. As you know, L was trialing sweet potatoes. The great news, L has passed sweet potatoes and she is currently on day 10 of all natural chicken. We continue to give God all the glory. Our sweet girl now has two safe foods, pears and sweet potatoes. Friends, this is huge! This year is going so much better than last year. Last year was the hardest year of my life, and I cannot even imagine how L feels about last year. I gained more gray hairs, for sure.

During food trials, L has to have 100% of that food with no added ingredients unless it is an oil. During the sweet potato trial, L was in line with me at Starbucks. We both found the One Potato, Two Potato sweet potato chips brand on the shelf. The Starbucks barista told me she didn’t know of any other stores that carried this brand. She was only familiar with Starbucks carrying the product. Every Starbucks we would visit, we would buy all the bags on the shelf. This past weekend, we were in Pennsylvania and I was telling the barista at this specific Starbucks and L’s disease. She immediately went to the back and brought all the bags the store had for us.

Big Sis holding the chips

Big Sis holding the chips

This warmed our hearts so much. L grinned ear to ear when she heard this barista did this all on her own. Not many people understand L’s disease and her huge limitations on food. These sweet potato chips rock her world. Believe me, we have tried many different brands but nothing compares to the One Potato, Two Potato brand. The chips can be bought online but shipping is very expensive, so hence the reason we try to buy in store.

The art of customer service is not lost. All the baristas in this store were so kind and compassionate. You could tell they all really cared about L’s disease. Thank you baristas in Carlisle, PA. You made this family’s day!

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!

Dog Therapy is the Best Medicine!

As you all know, my youngest daughter L has a rare disease. She amazes me with her strength. I’m going to be real and honest. I don’t know if I could live on a prescription formula. L shared how she deals with her chronic illness in her latest video. Hope you will take the time and watch.

Dogs are a great medicine for our sweet L. She is a huge animal lover and her heart beats very fast when she is around dogs. The love and compassion she has for dogs is amazing. Dog therapy is truly the best medicine for her. We had a big clinic day yesterday at Children’s Hospital and our friend met us at a nearby park with her dogs. This helped ease L’s anxiety and just seeing her smile ear to ear, warmed our hearts immensely.

Sissy and Teddy

In addition, on our recent trip to Florida, we stayed with family part of the trip and they have two boxers. L was over the moon during our entire stay. This picture will now be framed in her “dog” room.

Sissy and Turner

Dogs speak her language and help her cope. She can be having a bad day and our medicine is to immediately bring up dogs to her. She can sit for hours and tell you how to train a dog. Her future goal is to get a puppy, train the puppy, and have it be registered as a service dog so she can take the dog to Children’s hospitals. I feel she will accomplish this goal in the near future.

Enjoy her video and please continue praying for a cure!

Related Posts with Thumbnails
`Michael Kors Factory Outlet`Michael Kors outlet Online`Michael Kors handbags on sale` Cheap Michael Kors Bags` Michael Kors Hamilton Bags` Michael Kors Outlet Online` Michael Kors handbags outlet` Kors handbags outlet