The blog will be a little different over the next three weeks. Caedmon began Intensive Therasuit Therapy on Monday and he will continue with it for three full weeks. I wanted to use this opportunity to provide a glimpse into his world so that we can all better appreciate the challenges that little 6-year-old faces and the joyful resolve that he possesses. Before I talk about the therapy itself, I want to attempt to provide a sense of what living with Cerebral Palsy is like.
Hold your hands like the above picture. Now, I want you to begin rolling your thumbs, one over the other. Some might call this, “twiddling your thumbs.” Pretty simple, right. Now. I want you to make your right thumb rotate forward, while simultaneously, making your left thumb rotate in the opposite direction.
Do you feel how hard you have to concentrate? That’s similar to how hard Caedmon has to concentrate to pick up a fork, take a step, say “no,” etc. Every move he makes requires heavy concentration… it has to be mentally exhausting. Beyond the mental, his muscles, tendons, and ligaments are fighting against his desire for movement. This is due to significant inflexibility and involuntary muscle contractions. I don’t have a simple way to let you experience this. Imagine attempting to take a step, but having someone behind you holding your leg back. Or, as you attempt to reach for your cup of ice blue raspberry lemonade, that same person is hanging onto your wrist. The kicker is that occasionally those muscles or tendons will suddenly relax causing him to jerk his arm or leg forward more quickly than he can stop it. Have you ever tried to pick up a gallon of milk, but when you did, you discovered that the jug was almost empty, and you slammed it into the roof of the fridge? Caedmon’s body will play that trick on him sometimes too. Daily, routine motions for most people are mentally and physically frustrating events for C-dog… we are trying to help with that 🙂
Enter the Therasuit. This device (pictures below) is designed to help Caedmon develop a sense of what standing and sitting is “supposed” to feel like. Because he has always had CP, he has never experienced proper balance, center of gravity, etc. A good parallel is found in the speech patterns of someone who has always been deaf. Because they have never heard articulate speech, they have no reference point to discover their own speech. And because they cannot hear their own speech, they cannot self-correct any speech issues that they may have. They do not have a speech frame of reference. Caedmon does not have a physical frame of reference. The Therasuit is designed to provide that physical frame of reference and provide a little strength training as well. I’ll talk about it more in the coming weeks, but let’s see some pictures 🙂
This is Caedmon, on his way to Progressive Pediatric Development Center for his first day in the Therasuit… the understatement of the blog, he’s excited.
This is step one. He gets to lay on a massage table and get weighted down before he begins his day. They will lay long, tube shaped sand bags over his shoulders, thighs, and ankles before they lay that colorful weighted blanket on top of him. Without this trick, it is really difficult for Caedmon to relax. If you have ever held Caedmon, especially while he is sleeping, you can attest to the fact that his body is almost never limp. If you havent held Caedmon, imagine being underwater. Without weights, you tend to float towards the surface because of buoyancy. This is why scuba divers wear weight belts. The weights allow them to function without worrying about staying underwater. This weighing down serves a similar purpose.
This is the only part of the day when I want to switch places with Caedmon… his full body massage! (That is Carla, by the way. She is an interning Physical Therapist from the University of Maryland)
This is a good look at the Therasuit. I’ll explain more about it on another post.
Now he is getting the Therasuit adjusted for precision. The lady doing the adjustments is his regular PT, “Miss Val.” She is great with Caedmon!!
A kind-hearted lady in our church gave Caedmon this $5 to go and get a Happy Meal after his first big day in the Therasuit… he chose Burger King instead.
Ok, maybe I would trade places with him here too 🙂 He gets to close every day with a nice, warm, jacuzzi, bubble bath to relax his body and get ready for the next day. Not a bad way to end a day if you ask me.
So, there is day one. I’ll fill in some of the gaps in the next post and try to upload more pictures and maybe some video as well. Thanks for following along!!