When Josh went in to check in on Amaya this morning she seemed a bit off so he asked her what was wrong. She had a dream, but said she didn't want to talk about it because it wouldn't come true. She said that in her dream a nurse came to the house and was prepping her for surgery to remove the rush rod in her femur. She said the nurse told her she could only eat three things the night before the surgery so she chose macaroni & cheese, pudding and chocolate milk. She said she was sad when she woke up because it wasn't true. Amaya said she wants the rod to come out. She said she can't bend her leg or walk very well because of it (that's not true). She was frustrated and a bit sad. She told Josh she wanted to stay downstairs all day and be alone. When I went in she didn't want to talk to me about it at all. I was a bit sad. Josh said its okay because there's nothing wrong with taking some time to yourself. Its just hard for me to know that she's sad, frustrated, and dealing with some "heavy" things. I want to remove all her pain, anxiety, fear, stress and worry.
Its been an hour and a half and she's still down stairs. She's in my bed watching a movie and eating breakfast. She said she doesn't want to talk about it and just wants some space and to be alone. About two hours later she came upstairs and joined Lidie and me on the couch, but asked that we not talk about anything. So although I have many questions for her and things I want to say, I'm honoring her wish for space and not mentioning anything. So I'll wait until she's ready to talk.
The past few days Amaya has mentioned her frustrations. She's frustrated that she isn't walking yet. She often expresses a big desire to run, walk, cross her legs, be able to move freely. Several times she's asked about when she'll start therapy again. She's very anxious to go back so she can start learning all these things. She's excited and motivated to progress, so I'm confident that when she goes back to therapy she'll work hard and progress quickly. We've been doing our stretches at home, but its not the same. She said she wants me to up the amount of therapy we're doing here at home.
I put another call in to therapy this morning to see if we could schedule her appointments yet. They said they processed some paperwork last week, but still didn't have a referral processed and in place. I put in a call to Marilou (our amazingly helpful referral coordinator). Marilou said she sent paperwork over last week, but will resend it today and email me a copy. Its always a bit or a process to get referrals processed and approved. Its a bit frustrating and time consuming. As I'm typing I already received the referral from Marilou. It says its for a re-evalutaion and continued therapy for six weeks (3 times per week). It says its for "PT evaluation, manual therapy, gait training therapy, nueromuscular reeducation, therapeutic exercises, vasopneumaic device therapy." Now that I have the paperwork I need to make a few more calls to get things taken care of, hopefully by the end of the day. Wish me luck and lots of patience.