Today was Corey’s first official day of home schooling.
The change in her schedule is going to be very challenging as she adjusts to the afternoon therapy. Her District team will be coming every day to continue not only Speech, Occupational and Physical therapy but we will now add an educational piece. All of these therapies will be from 3pm on; 5 days a week. This late afternoon timeframe is very difficult for Corey because she doesn’t nap during the day. We will keep her Insurance team in the mornings so she will have mid day to rest. Usually by 4pm she is wiped out! Her therapies will be extended to 5:30.
In addition to the district and insurance team, the Intermediate Unit will be consulting with a representative trained by an organization called Brain Steps. This is a person that was trained in neurological disorders. Their consultation services include recommendations for augmentative communication and educational tools that will help Corey communicate as we wait for her voice and speech to develop. They also understand the learning challenges that TBI patients face as they try to “re-learn” what they’ve lost. The IU rep will work with her district teacher and the rest of our team. Her district teacher will now be here everyday to assess Corey’s reading, math, memory etc.
In keeping with Corey’s interests, Jori (her teacher) knowing she was interested in Culinary Arts chose Julie & Julia to read aloud to Corey. After several minutes, Jori tested Corey’s memory on the reading and asked her several comprehensive questions. She reported that Corey “Nailed it” with correct answers! Jen, her Physical therapist from school, hasn’t seen Corey since last week. She was amazed at the movement in her left foot and ankle in just a few days. Our insurance speech therapist Diane was also impressed with Corey’s responses to her questions. On more than one occasion Corey responded with phrased answers. Everyday Corey shows us some little nuance that surprises and excites her therapy team.
We have made another change to Corey’s therapy schedule. She has been exhibiting some pain through out the day. Now that Corey is vocal, she is calling out when she feels pain. She is reacting violently to the pain as she is learning how to properly express it and it takes us a few minutes to try to calm her down figure out the source and what she’s trying to say.
With the team from Avon Grove and Blue Cross, I’ve decided to take a break from our therapy at U of D for a few weeks. We went down this morning for a consultation to evaluate my concerns. Cathy agrees that Corey is making great progress at home and may need to ease into her schedule at a slower rate. As Corey is becoming more active, her muscles appear to be more tender and we also think she’s getting “Charlie Horses” or leg spasms. There is a difference in muscle tone from exercise vs. contraction of the muscles from toning (the neurological factor). She is recommending an increased stretching routine to help prepare Corey for her PT sessions. Cathy and I worked on several stretching exercises that I can teach our nurses that should loosen Corey up without taxing her muscles.
Corey has also been pointing to her mouth and saying “ow”. She does have thrush (this is caused when a person can not properly open their mouth, have thorough mouth care, and do not speak, swallow or eat regularly. If it is not managed it can also grow to the back of the throat and inhibit swallowing.
Corey refuses to eat, swallow, or try to accept food (she spits it out). This weekend I have been working with Corey to accept an ice cube. I ask her to open her mouth and extend her tongue so I can rub the sore tongue with the ice. This has been improving everyday. It also helps her to develop strength in her tongue that will assist her with forming words and swallowing. She did an amazing job tonight! She opens her mouth, extends her tongue and moves her tongue side to side against the ice cube. This produces saliva. I ask her to close her lips, bring her chin towards her chest and swallow. She began tonight’s exercise watching my motions but quickly adapted to the process and was swallowing all night; 4 Ice Cubes later, she was asking for ice and telling me that the water felt good in her throat. We may be on our way towards drinking and eating! I wonder what she’ll ask for first…and will she remember she was a vegetarian? Uncle Tom the Great thinks she’ll want a hot dog!
Corey I know that there have been several moments today that you were calling out in pain but I look at this as a good thing! You are telling me what’s wrong and I understand you. Look at what we’ve both learned as a result of “talking” to each other. I know what’s hurting and can try to help; and you are willing to work through it showing yet another developed skill…swallowing! It might seem silly but your moving your tongue and swallowing the ice water will help you not only get ready to eat but help you strengthen your speech as well. I’m so proud of you. Thank you for working with me to move past your pain. Thank you for your willingness to teach me and learn with me in how we can continue to help you get stronger. I love working with you honey. You teach me something new everyday and I get so excited to watch you re-learn and develop your skills! I love you. Happy dreams, xoxo