Jesse was born on August 7th 2004. Right away we knew something was wrong. He had awful eczema that just kept getting worse and constantly rubbed his eyes. All the doctors said it was just newborn skin, but I knew it was something more than that. He was a very fussy baby, never slept, always moving around like he just wasn’t comfortable and would wake up at night screaming in pain.
Finally when he was 6 months old we were referred to an allergist, when he tested positive to milk protein allergy we switched to soy formula and thought our problems were over. But, he didn’t get better. He, in fact, seemed to be getting worse. We were then referred to a GI. After a battery of excruciating tests to rule things out an endoscopy was ordered. This process took forever, so it seemed, he was finally diagnosed with Eosinophil Esophagitis in December of 2005.
I was relieved to finally put a name to this madness and thought now that we have a diagnosis we can treat him and he will get better. Unfortunately that was not the case and little did I know our journey had just begun. I was to learn that there is no cure for this awful disease and , at least in our case, no definates. After eliminating all food from Jesse’s diet and putting him on an elemental amino acid based formula for a number of weeks we would be able to gradually add some foods back to his diet, only if he didn’t react to them. Jesse would throw another wrench into the works however and refused to drink this formula that he so desperately needed. We tried everything to get him to drink it, he just wouldn’t. After ending up in the ER being treated for dehydration they inserted a feeding tube so he could get the nutrition that he needed.
By this point he was so tiny and so sick and malnourished that we feared the worse. All we could do was wait and pray that our precious baby would somehow get better. It’s been a roller coaster ride with our little Jesse, hospital stays, twice in ICU, a heartbroken 3 year old sister who just can’t understand why her little brother is always so sick and why he can’t eat the same things she does.
Jesse no longer needs the feeding tube and is drinking his formula by himself, the doctors say this may change at any time and we may, in the future, need to go back to the feeding tube. We pray that day never comes. He does have some foods now that he can eat and we continue to do food trials to add to that list, in the meantime the formula will provide him with the nutrients he is not getting from the food. At 27 months he weighs 21 pounds. He is not on any charts and is still considered failure to thrive and is very tiny, however he is acting like a normal little boy again and has not had to be hospitalized since April of 2006.
This is an awful disease and no parent should have to watch their child endure it, and no child should have to. More funding and research is needed to find a cure, until then we wait and pray that Jesse doesn’t take a turn for the worse and that we can continue our food trials so he can feel as normal as possible while he fights this disease.
Thank you for reading our story.
Jesse’s Mom and Dad and Big Sister Jadyn.