amaya at lake

amaya at lake

Wednesday, May 25, 2011

Meeting and exceeding goals!

     This past Tuesday we had another physical therapy session. Our regular therapist had to see other patients so we saw a new guy.  He had seen Amaya around but had never worked with her directly. Before he began the therapy session he looked over her chart to see what she's been working on and what her goals are.  When Amaya first had her physical therapy evaluation back in February they set several goals for her.  One was to have a range of motion in her knee up to 130 degrees. He said "well, let's just see how close we are." He checked her knee and not only did she make it to 130 degrees but she passed it!  She was able to get to 150 degrees with no problem at all!  I was happy, and so was she. I remember where she was two months ago and where she is now.  He was happy and excited and decided to push her some more during the session.  Lately she's been riding a bike with 20lbs. strapped on it. Not only does she ride it, but she goes up two small hills as well. Well this time he decided to see if she could do it with 30 lbs strapped on, and she did!
    She is resilient, and determined! Without complaint, she does what's asked of her.  Not only did she go up the hills with the extra weight, but she also rode around the entire facility (about a block or so). She also pulled Lidie ( who weighs about 40 lbs.) on her belly board. This one she does with both legs forward and backward. First she does it with both legs and then with just the left leg.  Later he took her into the "machines" and had her work on leg lifts, when she had no problem doing some of the stuff, he would add weights to her legs.  And still she didn't complain or give up.  She told him that she'd like to be a physical therapist when she grows up, which made his day.
     Watching her run, and maneuver around, and do the exercises is wonderful. I smile as I watch her, because I remember all those times when she would fall after her knee would give out. And I remember how much pain she was in after her surgery and during her first therapy sessions. I remember her pain and am relieved that it has passed. She still has some goals to reach; build strength in her ankle, knee, and leg muscles. But I am confident that she will reach them!

Friday, May 20, 2011

Glee

     During this process we've tried to find things that distract, entertain and show Amaya that she's not alone.  We found pictures of other children with PFFD online, we bought a photo book (created by a mother who also struggled in finding photos of children with PFFD to show her child), and as we saw people in the media using braces or wheelchairs we made sure to point them out to Amaya. This was obviously not an easy task. We did see that Troy from High School Musical wore a knee brace as did his teammate Jason.  When Amaya wore her knee braces she thought it was very cool that they also sported one.
     When we began to prepare Amaya for her super hip, super knee procedure we were able to find pictures online of other children in a spica cast, and in wheelchairs. Although she ended up not having the spica cast, only a leg cast and a wheelchair.
     This is where Glee comes in. One of the nice things about Glee, among many, is that they have main characters who are "different," for lack of a better word, from what society considers normal and beautiful.  Artie was someone who Amaya could relate to, and in some ways look up to.  Not only was he in a wheelchair like she would be for six weeks, but he also sang, had friends, danced and enjoyed life.  He made being in a wheel chair not just normal, but cool as well.  Each week we would sit and watch the show (this usually means me fast forwarding the "adult parts" and enjoying the music with her).  We looked forward to the music and to see what Arite would be doing.  When she was in her wheelchair she got gloves like he has, would wear her clip-on black tie and would maneuver around the house in her wheelchair like him.
     A few weeks ago when the "Born this Way" episode aired we sat to watch it, just like all other weeks.  I had never really payed much attention to the lyrics of that song, but during that moment as I sat there and rubbed her leg I couldn't help tear up and become emotional.  Rubbing her leg with PFFD, enjoying an uninterrupted cuddle and listening to the cast of Glee sing "there's nothing wrong with  loving who you are...I'm beautiful in my way 'cause God makes no mistakes...don't hide yourself in regret... Just love yourself."  It was quite emotional, on many levels.  I couldn't help but feel proud of Amaya. She has a level of understanding beyond her five and a half years. She has an acceptance and love for herself, just as she is. Which she transfers to those around her.  This is something that adults still struggle with, but here she is, with a sense of reality, optimism and love.  I have much to learn from her.  She's amazing!