Counting down the days

Some of the scariest words to hear as a parent of a child with an Eosinophilic Disease, "Ouch! Mommy, my food is stuck and it won't move!" She pounds her chest with her fist repeatedly, between tears of pain and gasps of breath. Every little bite we remind her "take small bites and chew really really good" .... she chokes on water, she chokes on tomato soup. Her esophagus is closing before our eyes and there is nothing we can do but watch and hold our breath.

We are honest with our children when it comes to the disease that is eating Annabelle. However, we never tell either of them what the disease specifically is doing or can potentially do, for example: we do not tell them "the boo-boo's are eating her throat so it bleeds and doesn't work, it's going to close shut and she'll never eat food again". We don't tell them "if her intestines and colon continue to succumb to the disease, she will have another big surgery and need ANOTHER tube".

We shield them from the specifics of the disease and keep it more to their level of comprehension. "The boo-boo's inside Annabelle's tummy make her sick and her tummy hurt - sometimes the boo-boo's are worse when she eats a certain food, if she breathes allergies in the air, if she is stressed etc. Because the eosinophils inside her body don't know how to fight correctly, they forget to fight germs like the tummy bug and if Annabelle is around someone with a tummy bug, she could get really really sick. That's why she wears a mask." "The boo-boo's have hurt her throat really badly and we are trying to make it better, that's why we have a tubey in her tummy so she can eat without being in pain, and mommy and daddy can make sure she is getting all her food so she can grow big and strong. ALSO! If she doesn't want to take her yucky medicine, we can put it right into her tube instead - how cool is that?!"


When Annabelle began choking as we watched her pound her chest in pain - our hearts sank. Without a doubt, this disease is running rampant and we need help, fast. Her lower GI is slightly improved - we have taken it upon ourselves to transition her diet and meds a bit to try to help her. She bounces between bouts of severe constipation where her bowels are simply not moving, and then days of loose, bloody stool. There is very little in between and we are absolutely terrified she will lose these portions of her GI system while in Cincinnati :(

Her pain is becoming more difficult to manage and I think her anxiety is building at the same pace. She no longer wants to sleep alone - she's scared to death to be alone, she wants someone beside her at all times.. when watching TV, eating, resting etc. She is a basket of fun and love but she's absolutely crumbling and deteriorating on the inside. There are no words to explain what AK and I are feeling and fearing. All we know is that we need to get our baby girl to Ohio as soon as possible. 26 Days and Counting.