A Boring State of Bliss
Welcome! This is the first of many posts about my silly and crazy little family. I am looking forward to bringing you further into my family than my book will be able to. Bring you a little additional insight into our everyday New Normal. Of course, we aren’t always doing interesting things, so it could get boring. If you know our story at all, you will find that boring is sometimes a major relief to us. In fact, we are currently in a boring state of bliss.
Before I go any further, I want to let you know that I am always willing to answer questions and will try to address any that you have. Please understand that sometimes, I may remove a question that I don’t feel is appropriate to our story for privacy reasons.
When we received that diagnosis, Hank was about two years old.
Together, my husband and I have two children, both rambunctious boys: Dave and Hank. Dave was born problem free and has remained that way for the past nearly 10 years. Hank, however, is our rare child. A spunky boy who has been diagnosed with the rare disease, Eosinophilic Esophagitis or EOE. When we received that diagnosis, Hank was about two years old. We didn’t know anyone with this affliction and thought that we were utterly alone in the world. In the past four years, we have learned that this is not as uncommon as we thought, we were not the only ones and frankly, we weren’t the only ones within a five-mile radius of our home.
We started the journey as a family to get to where we are today and will continue to work on it well into Hank’s adulthood. In this journey, we have discovered a New Normal, our support group, how to educate ourselves as well as others. We will continue to move in this direction so that when it is time to hand off Hank to his adult self, he can pick up and live his very best life.
In EOE, there is a high amount of white blood cells, eosinophil, and they hang out with no desire to leave.
What is Eosinophilic Esophagitis, you ask? Well, it is a very hard disease to pronounce. But really, according to APFED, it is the chronic, allergic inflammatory disease of the esophagus (the tube that connects your mouth to your stomach). In EOE, there is a high amount of white blood cells, eosinophil, and they hang out there with no desire to leave.
The symptoms vary from person to person and allergen to allergen. Refusing to eat, tummy pain, unable to swallow or vomiting as well as allergy shiners, facial swelling and eczema, rashes and itching.
With everything that we have to go through, we know that there are kids and adults who have this way worse than we do. We are lucky that he can eat solid food and that there are foods that he likes. We are lucky that there isn’t a high number of eosinophils anywhere but his esophagus. We are lucky that he can tell us when something is wrong. We are lucky that we have him and he has us. It just comes down to: We are so lucky to be the family that we are.
As a new reader, I welcome you to our family as well.
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