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?

Officially Weaned Off Of Steroids #EosinophilicEsophagitis

Mom and LI wanted to update on L’s latest journey with living with eosinophilic esophagitis. From the last blog post, you know we were trying foods that eliminated the top 8. Unfortunately, after 48 hours, we ended up in the emergency room. She had a severe reaction. It was at this time, we started questioning if we were under the right care for L. After our research and talking with other families that deal with this disease, we switched to a hospital that is experienced in treating this disease.

This new hospital and team of doctors are amazing. They care about L and stay in contact with us. This is a hard disease to navigate and we need doctors that are going to walk this journey with us. It was decided that L would go on a new steroid and 100% Neocate Splash formula, no other foods or beverages. After 6 weeks, L is doing amazing with no reactions or symptoms. As of last Friday, we have weaned L off her steroids and all other medicines. Isn’t this great news?

Now, we let her body heal for three weeks before her next endoscopy and biopsies on June 30th. If all looks well during the endoscopy and biopsies, L will be able to do her first single food trial. She is hoping for potatoes but we will have to see what the allergist and GI doctor says for her to try. The allergist said they go on experience of what foods are usually not a trigger with other patients. This disease is very unique to each kid, so it is a trial and error method to figure out safe foods. We will try each food for six weeks and then do an endoscopy to see if this will be a safe food for L.

We will continue to keep you all posted in hopes L’s journey will be able to help others. Our family dynamics have changed so much since L cannot have any food. Obviously, her feelings matter to us and we want to be sensitive to doing activities with food. You don’t realize how much life in general revolves around food until your child cannot eat food.

My husband and I both continuously encourage L, praise her, and lift her up on a daily basis. She is a very strong and brave girl. Positive thoughts, lots of prayers and encouragement have gotten her through these last few months. We are in this with her!

Pray with us for good news on June 30th! Thank you!

Embarking on a New Health Journey: Eosinophilic Esophagitis

I know I haven’t written a lot of personal posts here at lately. There is a reason. Since January, my youngest daughter, L, has been on a health journey. It all started the second week of January when we were in the emergency room. She swallowed an M&M and it got stuck in her esophagus. This frightened L and thankfully we only live about 10 minutes from our local emergency room. With their quick thinking, we were able to get the M&M to go down but it opened up a can of worms so to speak. This was on a Thursday night and over the next few days, L kept complaining about food not being able to go down so she just quit eating. Milkshakes and liquids were her avenues of getting nutrients.

On Tuesday morning, I decided to call her allergist. They requested we bring her in right away. The allergist examined L and thought she had a stricture in her esophagus. This led us being sent directly to an ear, nose, and throat doctor. After he examined L, we were sent to the hospital for a barium swallow to check to see if there was a stricture. There was no stricture, but the radiologist showed me on the screen, her stomach was sending lots of acid back up her esophagus. We were sent back to the ear, nose, and throat doctor (ENT). He proceeded to put her on acid reflux medicine and scheduled a test called a manometry test to be done the next week. This test tells if your esophagus is able to move food to your stomach normally.

Fast forward to the next week, L’s symptoms were not being resolved and still unable to swallow food. She failed the manometry test, so the ENT scheduled an emergency surgery to have her esophagus dilated. She did well with the surgery and the pictures they were able to take were not pretty. He wanted her to stay on the acid reflux medicine and follow-up in two weeks. In the meantime, something just did not sit right with me. I felt like there was a bigger problem instead of acid reflux. I called her pediatrician and she was able to get us a fast referral to the closest Children’s Hospital.

The first appointment at Children’s Hospital was full of information and left us feeling like we were finally going to get a proper diagnosis. The pediatric GI put L on another medication and wanted her to be on it for four weeks before she did a full endoscopy and biopsies. Unfortunately, during this time L is still not able to eat which is just playing on all of our emotions. It is hard to see your daughter drop 16 pounds in less than two months. The doctor prescribed for L to be on NeoCate Splash. This is an amnio acid formula and is hypoallergenic.

EoE NeoCate
Two weeks on the medication, L had another allergic reaction with her throat. Children’s told us to take her to Urgent Care and they were moving up her surgical procedure for one week later. She was to stay on her medication and the formula.

It was time for the surgical procedure that would finally give us answers. The pediatric GI surgeon was so good with L and didn’t mind her million questions before she was put to sleep. After the surgery, the surgeon comes to talk to us and said without a doubt your daughter has eosinophilic esophagitis (EoE). This is a term that we were told was a possibility at our last appointment, but were praying and hoping this was not the case. We were just relieved and grateful to finally get a diagnosis for L.

What is EoE you may ask? This is a rare and chronic disorder. This is a type of white blood cell that builds up in the esophagus because the esophagus thinks food is a foreign particle. More than likely, L has had it for a few years as the doctor said it has damaged her esophagus greatly, where she has no motility. The signs were missed over the years and I do feel so bad for that. We are adding a steroid to hopefully help her regain the motility back. She was very swollen all the way up to her throat. They took 8 biopsies while they were in there as well so we will wait for those to come back. We are scheduled for a big meeting at Children’s the first week of April for a long term treatment plan. Currently, there is no cure for this disease. Although, Cincinnati Children’s Hospital has a division that is dedicated to finding a cure for EoE. For now, we will pray the steroid will at least bring back her motility in her esophagus and she will stay on the formula so she doesn’t drop any more weight.

We are grateful for Lyndsee’s surgeon/doctor. She stayed right there with us answering our questions. This will be a long journey to see what foods are causing EoE in L’s body. I will update her journey here so maybe in return it can help other families.

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