Welcome to Julia's Site!

This blog is made available for several reasons. First and foremost, to keep those that know Julia current with what is going on with her and her progress. It is also my intention to educate those who do not know Julia about what happened to her, so they can make educated decisions about their own children. I want to welcome those of you with questions about her disease, treatments, and just the general life (the good and the bad) of living with a brain damaged child. Finally, it is a therapeutic release for me, Julia's mom, Susan. I love writing and need to get some of this stuff out of my head and onto "paper". Thank you!

Tuesday, January 12, 2010

Overwhelmed

Today has been a day of phone calls to bethesda hospital, miami childrens hospital, denver childrens hospital, sky ridge medical hospital, therapy clinics, regular pediatricians, prosthetic offices, physicians who work in the hospitals, radiologists, imaging,(as everything is billed separately)fire and rescue, life flight, air life, attorneys, and life care planners. My brain hurts. It is overwhelming trying to get all the documentation I need to get together for Julia's case. But, as busy as I am, it will get done. I just need to take a deep breath and press on. Soon this will all come to a head and Julia's life will take a very positive turn.

OH, and we taught her how to say cow....sort of.....I asked her what a cow says and said MOO MOO and she immitated it really well! more of an OO OO than a moo, but now when you show her a pic of a cow she says oo or ow.....THAT IS A GREAT STEP JULIA! I received some paperwork in the mail today for her talker that she is being trained on in augmentative communication therapy....its a step in the right direction! The therapist said we could have her electronic talker within a month or within a year - you just never know, but it is in the works! WOO HOO!!! Her therapist is so funny - each week she adds a new symbol on the talker, and today it was "fist pump/bump" because that is julia's new favorite thing to do. We were fist pumping/bumping everything today in therapy....too funny......She also kept communicating that she wanted to make the babydoll dance - but got mad when we made the baby dance "normal".....she wanted the baby to break-dance - a move Shawn showed her with the babydoll last week...too funny.

Julia is a very spirited little girl and her sense of humor emerges more and more everyday. What a trooper.

Susan

3 comments:

  1. Susan...it sounds like you are having some fun together among the chaos, yeah!! And FYI...it's a fist bump, and don't you know that is a Democratic move.....he he:)

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  2. i will update the pump to bump....i learned it from jack - his pronunciation is not the best....i had no idea it was democratic...i will remove it from the talker...kidding.

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