Corey had a very good day. I spoke at length to Diane, her speech therapist, about the choking episode from the night before. Diane has been working in her field for many years and is an invaluable resource for us. We discussed the change in Corey’s ability to swallow and manage her secretions. We also discussed the Burning Mouth syndrome. Most importantly, we included Corey in the conversation asking her questions about what it is like for her, what does she feel, why is she choosing to spit rather than swallow?
Corey writes her answers on the dry erase board to communicate with us. The readers digest version; she keeps a face cloth in her mouth partly due to the burning sensation but more to absorb the secretions because she is afraid to swallow and choke. The increase in saliva from the mouth syndrome accumulates in the back of her mouth. Depending on her posture and/or position, she can not move the fluid from the front/sides of her mouth to the back in order to swallow. Her impulse is to spit it out or put a face cloth in her mouth to absorb the fluid so she doesn’t have to swallow.
Diane shared several patient stories with us recounting their experiences. Her former patients describe the sensation of having a large ball of fluid that frightens them to swallow due to the size and fear that it will cause them to gag and choke. There is a difference in choking on food vs. fluid. We will be working towards helping Corey gain the confidence to swallow. Keep in mind; swallowing is a goal not only towards nutrition but it strengthens the muscles to help her speak as well. We will also try to limit her evening “conversations” to shorter periods rather than allowing Chatty Cathy to fatigue with longer periods of communication.
A year ago we were counting the points to see where Corey would score on the comma recovery scale…today we are counting the minutes on a stop watch to see how long she’s standing! I like the stop watch much better!!
4 Minutes and 20 seconds…Corey’s new time for standing with the walker/platform increased from yesterday! She and Gillian also worked on stepping forward with her right foot, shifting her weight to the right, holding the stance, shifting her weight back on the left leg, lifting and moving the right foot backwards to her original standing position. This may seem insignificant and too easy but in actuality this exercise was a tremendous accomplishment for Corey. She can not take steps forward until she gains strength in her legs to hold and shift her weight. Corey’s left side is her weaker side. She not only shifted her weight to the left, she did so without buckling her left knee! She also managed to hold her body weight on her left leg in order to lift the right leg and move it forward and back.
OT had a great session as well. Alice brought some of the school toys to use with Corey. She explained to Corey that the toys are not to “dumb it down” or insult her, it’s a tool to help Alice assess what Corey knows and recognizes. Today she had success decoding primary colors. It was the first session that showed consistent results with accurate responses. The other surprise was during their upper body stretches. Alice asked Corey to count with her. Normally Corey counts to 10 using her right hand. Today she counted out loud 1-10 with perfect accuracy!
Working with Corey and her therapists is more than an educational experience for me. I am reminded of just how much I take for granted. Corey is relearning every aspect of her existence. She is learning how to speak, swallow, eat, drink, stand, sit and walk. Cognitively we are assessing her short term and long term memory which is critical to following directions, working with numbers and math (counting money, cooking, dialing a phone, knowing the time of day), reading and writing as well as personal hygiene including dressing, grooming and toileting.
We don’t remember what it was like to learn how to walk and I can’t truly remember how we taught Corey to walk or talk 18 years ago but teaching her as an adult is fascinating. Each step requires multiple “mind steps”.
Think of what you do in a day. Think of each individual task. Let’s just look at one example; when you want to write a word. The thought process begins with what you want to say. You choose the word, the brain sends the signal to your hand to pick up the pen, hold the pen, remember what the formation of the letters are, write each letter in order to formulate the word. The brain then sends the signal to open the mouth, move the tongue, use your breath to coordinate with the voice using the vocal chords and out comes the sound to match the written word. What is amazing is that I’ve left out at least 20 additional steps to this simple task.
It’s easy to lose sight of the little things we do in a day. It isn’t until we have to relearn what is most important and focus on what used to be seamless that we are reawakened. This awareness is a gift; a second chance. As Corey has said, “Love Life”. October 22, 2010 we moved from Christiana’s ICU to Bryn Mawr Rehab Hospital. October 21, 2011 we will be driving to Rye, NY to spend the weekend with family and friends and celebrate Corey’s 19th birthday at my sister’s house. What a difference a year makes!
Corey when I look forward a year it seems so far away and overwhelming. When I look back at the past year it’s difficult to comprehend all that you’ve achieved and it still seems like a lifetime. But when I look at the same day with just one year’s difference I’m excited and so grateful. I know where you want to be but remembering where you came from is the best perspective to celebrate today! I love you, xoxo