Baldwinsville, Ny
USA

315-802-8202

THE PURPOSE OF MY BLOG IS TO FIND OTHERS OUT THERE SIMILAR TO OUR DAUGHTER'S CONDITION.  TO HAVE OUR STORY BE HEARD AND SPREAD AROUND. TO GET GUIDANCE, MEET NEW PEOPLE, A VIRTUAL COMMUNITY OF HOPE! WE'RE HOLDING ON TO THE POSSIBILITIES! LET YOUR VOICES BE HEARD. EVEN IF IT'S JUST A HELLO 

2016 May 20th NPO Except Water

Today we received a phone call from Hannah's GI team, with some pretty awful news that Hannah isn't going to accept well at all! Hell we're having a hard time swallowing it still! The Doctor said Hannah is to stop all food, and liquid by mouth except water NO EXCEPTIONS as of NOW (shortcode for nothing by mouth is NPO) Come to find out, more biopsies came back with changes, and she still has inflammation in her esophagus, and also was told that her EOE is her second RARE Disease!! WAIT!! REWIND< BACK UP! SAY what?? Thats right, add that to the list, Eosinophilic Esophagitis (EoE) is a rare white blood cell disease. It is characterized by elevated eosinophils in the esophagus. It is an Autoimmune disease that causes the body to think food is a parasite and attacks itself. It causes the body to be allergic to many or all foods. http://rarediseases.org/rare-diseases/eosinophilic-esophagitis 

So another RARE disease, but now it stops all food and liquids by mouth because it's her esophagus that's riddled with disease, then keep on moving down, and you got her stomach that's paralyzed with Severe Gastroparesis. 

So as of now her breakfast, lunch and dinner is what you see in the picture.. How much more heart wrenching can this all get!!!

Our blender makes snow now every day - 3 times a day, until the blades run dull on that!

(by the way, anyone know how long that usually last, blending ice into snow 90 times a month?) 

 breakfast, lunch, and dinner SNOW

breakfast, lunch, and dinner SNOW