I want to reiterate my thanks to all of you who so warmly offered support when I wrote about my youngest child, his continuing health issues, and my failings at "bucking up".
After my son's endoscopy we had uncertain answers from his GI doctor and a diagnose of, "Well, we can call it eosinophilic esophagitis." When pressed on whether or not Max has EoE we were met with, "We can call it that." After learning that Max had lost weight again we were warned of one more weight loss or a failure to gain would lead to a feeding tube. With no answers, no diagnosis, and no treatment other than an increase in his Prevacid and a possible a feeding tube looming in the future, we scrambled around to find a specialist in eosinophilic esophagitis (EoE) for a second opinion. Our search led us two hours north to Atlanta.
It took us two weeks to get in but we have a confirmed diagnosis of EoE. Basically, it's an allergic reaction in the esophagus. When he eats (ha...hahahaha) foods that he's allergic to, white blood cells called eosinophils attack the esophagus. This reaction quickly caused his dismal eating habits to spiral downwards to what they are today; a mixture of screaming, crying, food flinging, and perhaps a slurp of a baby food pouch.
While unbelievably relieved to have a confirmed diagnosis and a doctor that actually listened to us when we told him that Max simply doesn't eat most of the time, we're also feeling undeniably overwhelmed. However, I know how incredibly lucky we are to have this diagnosis for Max at only thirteen-months-old. I know that others have to wait much longer.
I also find that I'm fighting feelings of anger. I'm actually really angry. For all the times that we were assured, "It's normal", when we knew that it wasn't. For eventually believing them. For all of the waiting that doctors insisted on. I'm angry at myself for not fighting harder in the beginning when we could barely scratch and claw ourselves through a day to collapse, exhausted and beaten but at least alive at the end of the day, to look forward to the one hour of rest before everything started back up. At people laughing Max off as just a "mama's boy" as he clung on to me in pain, comforted only by my constant touch and reassurance. I'm angry at how horribly I've failed my daughter in the past year as caring for Max has consumed almost all of me.
I'm not supposed to be angry. I don't want to feel this angry.
I just want relief. For him, for me, for our whole family.