We are hoping for a cure in 2017!

hope-for-a-cure-eoe

Our matching bracelets from Keep Collection are my favorite. It is our daily reminder to never give up hope on a cure.

We survived the holiday season. I didn’t bake any traditional Christmas delights or any Christmas meals. We focused on spending time together as a family and remaining positive. We are coming up on a year of L’s initial food impaction that led us to her diagnosis of eosinophilic esophagitis.

I wasn’t quite sure how we would make it through the first year, but we did it with God’s strength, prayers, and encouragement from friends in the EoE community. Going into this health journey, my mind was swirling with so many questions. Now, I am able to help other families. We obviously do not have all the answers as L has yet to confirm her first safe food. She has her fifth scope this Thursday to determine if we can for sure say pears is a safe food. Going into this scope, I’m remaining positive that she is going to have a clean scope. L has not had any major reactions or symptoms, so we are believing this is going to be a good news scope.

Food trials are hard. You get into a safe zone of no symptoms and want to just stay there because of fear of adding new foods and the symptoms return. Our goal is to try and add more foods this year. L has tried a couple foods but didn’t really make it past day 5 or 6, so her allergist confirmed we should just stick with one food trial at a time instead of trying to double up on foods. The sad news is a endoscopy has to be used each time to confirm or deny a safe food. Hopefully with research this year, there will be an easier way to check on the esophagus. Each time L has an endoscopy, she has to be put to asleep so you can imagine her anxiety about scope days.

We will let you know how the scope goes on January 12 and figure out which food we will trial next. L has almost lived on a prescription formula to keep her alive for a year. My  husband mentioned to me tonight, he doesn’t know how she continues to drink the formula (usually 7 to 8 boxes a day). The formula does not have a great smell, but with her endurance and strength, she drinks to boxes.

I continue to say she is a such a strong and brave child!

l

Will you participate in the Teal Pumpkin Project? #FoodAllergyAwareness

As many know, L suffers every day with eosinophilic esophagitits. She amazes us with her strength. Recently, she started her own YouTube Channel to raise awareness about this disease and to help others suffering with the disease.

This Halloween season, all children deserve to have a safe and happy trick-or-treating experience. Check out L’s video about the Teal Pumpkin Project!

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!

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