Charley did great last night. This has definitely been a tough experience but my little girl is so strong. Today we are hoping to get the breathing tube out and the sedative medications lowered. We are in the PICU and everyone here is wonderful. For those of you wanting to visit it is building 1 on the 2nd floor. Thank you for all the love and support.
After the surgery is completed Charley will be in the PICU. She will be intubated until tomorrow sometime.
Charley went back for surgery at 8:40. The doctors said to plan on 6 hours. I will update you as soon as I know anything.
Tuesday after school Charley, her behavior therapist, and I went to target. Before we started our shopping we got Starbucks. I got the very berry hibiscus drink and just to be polite I offered Charley a sip. She pushed it away like she usually does but I offered again. She took a huge drink :). During our shopping he and I "shared" the drink. I use the term shared loosely because she drank most of it. I was so excited I almost cried. It is so hard to find things she will try and actually like. Now when I go to Starbucks I can get mommy and daughter drinks. What a fun treat for my little lady and I.
Dear ,
You had a bad day. I reached out and grabbed at you and you reacted poorly. You had a bad day. You grabbed my shirt aggressively and spoke to me in a mean voice. Today I woke up and my mom changed my diaper and feed me breakfast and got me dressed. She said nice hands Charley when I was hitting myself in the head. She says that a lot because I hit a lot. I can’t talk and it’s really hard for me to not be able to ask for what I need. My mom did my hair and brushed my teeth. She carried me to the van and put me in my wheelchair. I scream and hit all the way to school. My mom doesn’t know why. I have a hard time at drop off and I had mean hands with my mom even though I love her so much. She kisses me goodbye and trust the adults in my classroom to keep me safe. At the end of school my aide tells my mom how I had a difficult time having nice hands with myself. My aide has a scratch from me and I pulled her hair several times. I know it’s not nice but I don’t do it to be hurtful. I can’t tell anyone how I have 4 new teeth coming in or how my right hip (the one I am about to have surgery on) hurts from arthritis. I can’t express how limited my vision is or how all the noise and hand over hand exercises are sensory overload for me. I can’t say hey guys I’m frustrated because know understands what I need right now. So I sit in my chair and I use my hands in the only ways I can but you had a bad day. Charley Today when I was picking Charley up from school I witnessed another special needs child's aide being aggressive with Charley and scolding her. I was furious and heart broken. My child doesn't learn the way a typical child does. If she grabs at you she WILL NOT understand if you grab back at her and pull on her shirt. The words "you don't like me grabbing at you so don't grab at me" are lost on her. She understands "calm hands please". She doesn't know why you would talk to her so mean. She just gets stressed and cries or acts out more because she's scared. I'm trying to be calm but the momma bear in me wants to grab that woman like she grab my child and....... I'm sure you can imagine. This is has always been one of my biggest fears. People being mean to my non verbal child - am I supposed to follow her around every second to make sure everyone is being appropriate with her? What am I missing that she can't tell me? It makes me physically ill. She is my child. She is my hopes and my dreams. She is my inspiration. Just because she's not "typical" to the world doesn't mean she's not perfect to me!!
After several confusing doctors appointments it has been confirmed that only one baby growing inside me. I am almost 12 weeks and the baby is looking good. Please pray that the baby continues to grow healthy and strong. Thank you.
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