Today was one of those days…Miss Corey was playing on the “mood swings” today. For the most part we were getting smiley faces on the white board but then her ‘evil twin’ would come out and she definitely didn’t want to play nice with others.
We had a meeting today with our team, Corey’s teacher, PT, OT and the representative from the Intermediate Unit, Dave. Dave is also trained with an organization called Brain Steps. We are going to create a blog for the team’s communication so each branch of the team will know what the other is working on since we all work independently yet together with Corey. We will continue to meet together and include Corey. She sat in the meeting today. It was surprising and fascinating to watch her listen attentively to Dave as he spoke about the care plan. She sat in her chair with the white board, pen in hand. A few times, she wrote “good” and drew a smiley face in response to some of his conversation. At one point she raised her hand as if to ask a question! When asked, she actually wrote, “Fine”…she agreed with his comment at that moment.
We also had a Doctor’s appointment with Corey’s primary care physician. Corey is refusing to swallow now. As a result, she is trying to spit out her saliva and/or keep a towel in her mouth. Dr. B confirmed that the thrush looks better however, Corey’s throat was red and Dr. B is wondering if the yeast infection from thrush has moved to her throat. Corey has written that it hurts to swallow and she’s afraid to swallow. Dr. B is referring her to an Ear, Nose and Throat specialist. She will be making the appointment for us tomorrow.
Corey’s blood work returned normal. She is on the lower end of normal for Vitamin D and other than adding a multi-vitamin, she’s 100%. We have a follow up with Dr. Long at Bryn Mawr on Friday to discuss the CAT scan, seizure medications, and orthopedic braces for her feet.
I know it’s only Tuesday but we can’t wait for Friday. This weekend family is coming in. In fact, there is going to be a small contingency of family and friends that will be running to see Corey…literally! The Philadelphia Rock n’ Roll ½ marathon sponsored by ING is being held in town Sunday between 9-11am. My two nieces, Christy and Kerri, have organized 15 runners to form Team Corey. They have created a special website and each runner has been soliciting sponsors as a fundraiser for Corey.
The weekend begins by going in on Saturday night for dinner to meet the Team, some of whom we haven’t ever met but wanted to join her cause. We are most excited to see family! My sister Diane, Uncle Tom the Great, Aunt Marjy, Christy, her husband George, Kerri and her fiancé Brendan, Marjy’s sister Marci and her husband Tom, Corey’s cousin Becky (Beattie side of the family) as well as JohnPaul and Caitlin will all be there.
Sunday morning, some are running the race and some of us will be the cheerleaders. Tom and Marjy will be running after Christy and George’s two boys Tommy and Justin! The finish line is at the steps of the Philadelphia Art Museum. Corey, JohnPaul and I went to cheer for Kerri and George in this same race last year (Christy was pregnant and couldn’t run last year and Corey was chasing baby Tommy). Corey mentioned to Christy that she couldn’t imagine running in a marathon but if Christy did it she would run with her next year, meaning this year. Corey’s not quite ready for her ½ marathon but the cousins have decided that they will make this an annual fundraiser for Corey until she can run the race with them. Until then, we will be cheering them on and waiting at the finish line. Won’t it be amazing when we can be there to see Corey cross the finish line! Suddenly I hear the Rocky theme song! xoxo