Hi Everyone,
Tonight both Corey and I are two tired women! She had a very rough day/night. We have to figure out how to help her with her mouth. There has got to be a solution that will relieve her pain. At the moment, we are told that it is a combination of thrush (which we can not seem to get rid of) and a neurological issue that will improve as Corey continues to improve and therefore beyond our control to heal; except for applying topical antidotes that give temporary relief.
Her discomfort is so severe it is impeding the progress of her speaking and eating. Diane, ST, is going to reach out to the professionals within her circle and we will reach out as well. We have an appointment with a new Neurologist this Thursday. I’m hoping he may have a solution we can try. I will also be reaching out to the Ear, Nose and Throat doctor again.
Corey not only pushed through ST but PT as well. Once she made it through her stretches, she sat on the side of the matte to play our version of kickball and volleyball. Corey also stood for 6 minutes with the walker. She is improving each time we practice shifting her weight, alternately releasing her knees, and taking a small step forward/back with her right foot. Today she had a first. We assisted her left leg but Gillian could feel the muscles of her left leg contract to attempt the same step as the right. She stepped left, held her body weight through the shift, we assisted her to step back and she returned to a neutral stance. We repeated this exercise throughout the 6 minutes. It was very exciting!
I’m grateful that I was able to get her settled this evening. It’s amazing the “tricks” I can come up with to distract her from her pain. We wrote her Christmas List, what she’d like to get JohnPaul and Caitlin (sorry no hints they read the page too), played hangman and tic-tac-toe. Thank goodness Corey’s teacher brought us a surprise last week that was the winning trick for tonight. If anyone wants to win America’s Funniest Home Videos, you should set up a hidden camera to watch me sing/dance with a Karaoke machine! Corey had no choice but be distracted by my “talent”. They say that Music soothes the soul and Laughter is the best medicine? Well watching my Vegas show certainly qualifies for the latter! Either way Corey seemed to finally settle down to fall asleep.
Speaking of music and laughter, we are looking forward to this Friday night! Dan Orlando, one of my many “adopted” sons, is an accomplished musician. I refer to him as a modern day Billy Joel. He is incredibly talented and recently graduated from the Cincinnati Conservatory of Music (notice I wrote adopted…his talent came from his “other” mother). Dan will be headlining a benefit concert for Corey which will highlight his latest solo compositions. Every headliner needs an opening act and Dan has chosen Caitlin! She will be sharing her comedic insights for 30 minutes. The concert will be held locally at The Flash in Kennett Square from 8-10pm. For those of you interested, I think there may be some tickets available but it’s close to being sold out! http://www.kennettflash.org/tickets.html.
Keep your fingers crossed, if Corey feels well enough, she will be attending the concert. I can’t think of any therapy or medication that would help her more right now!
Corey I will guarantee, Dan is a MUCH better singer than I am and we already know that all Caitlin has to do is walk into a room and she makes you feel better. Sleep well honey. Just a few more days…xoxo