Gina Szajnuk: Getting ready to go back to school for a rare child is a little different than a healthy child. When most families are just shopping at Target or Walmart for their school supplies, a rare child is probably having a procedure done or getting cleared by a physician. For Ava, going back to school meant getting her blood drawn, having an upper endoscopy to check her EOE,Eosinophilic Esophagitis, as well as having her yearly MRI to check the status of her shunt. In the three weeks before school started, we met with her neurologist, her GI specialist, her pediatrician and her allergist. And, we spoke to her neurosurgeon. We had to meet with her teacher, her principal, her counselor for her 504 plan as well. All of this…was just to get ready to start school again. We feel blessed that Ava can attend school. I know many rare children that are not able to attend school this year or have to have an alternative schedule.

Ava’s scope proved that her EOE is back and active. We reintroduced dairy over the summer. Ava was in Heaven! She continues to say that she can handle her four cranial surgeries but she cannot handle giving up dairy. Since her EOE is active now, we will be taking dairy away from her again. We will also stop beef.

Ava’s MRI showed that she not only has an arachnoid cyst, subdural hygroma but now a subdural hematoma. The neurologist called to tell me that he has never seen anything like this before and it was out of his league. He wrote an email to her neurosurgeon asking for his advice since there is no standard protocol.  The neurosurgeon called and told us that there isn’t anything they should do about it right now. If she was having headaches, they would have to address it. Since she is asymptomatic, we will leave it alone.  This doesn’t help our anxiety. We live in fear of her waking up and telling us her head hurts. It’s a miracle that Ava has no cognitive damage from having an arachnoid cyst, subdural hygroma and a subdural hematoma. She is a miracle child. Thank you, God.