Evie the Extraordinary and Her Mommy: The Journey As We Go

Dear Evie, As much as I'd love this superpower, Mommy is not a mind reader.  When you are sitting in front of me asking for music, I do not know what song you are thinking of in your head.  I ask you if you want "The Cat Came Back,"  "Rocketship Run," or "Stand Up Sit Down," but you just growl at me and get frustrated that I can't read your mind.  So I am doing something about it.  Love, Mommy I am making my own personalized Evie PECS board.  PECS stands for Picture Exchange Communication System.  It is very useful for helping nonverbal people to communicate. Evie has matching communication books made of PECS pictures at school and at home.  But when it comes time for what song she wants to be played, the field is open. Evie's school provided a Communication Book for home to match her book at school. It even has pictures of each of her classmates and teachers and therapists! Evie's song menu choices in her school commu

This post is dedicated to Evie's first boyfriend JJ, who lounged next to her on the carpet as they g-tubed peacefully together at the same time at the ripe age of 6 months.   He has moved onto greener pastures and now tries to sit on every woman's lap possible.  At the age of 3, he is a lady killer! We love you, JJ!  <3 I wanted to share some of Evie's favorite blended foods.  It's a tough balance when we have to fatten her up, but I have to make blends that taste good by mouth too.  Whatever she doesn't eat orally is thrown in a blender with some formula and put into her tummy by g-tube.  She eats 3 meals a day orally and gets supplemental formula/blends to help her with her growth rate. We just had our most successful Nutrition visit yet since trying to lessen the amount of Pediasure!  Evie doubled her growth rate from 5 grams a day to 10 grams a day!  I wanted to take a picture.  Hearing "well done" at this visit is enough to make a tubie mam