Hi Everyone,
It’s been a tough week for Corey. It’s good news, bad news scenario. The good news is we believe Corey’s nerves are reconnecting. The bad news, she is having bursts of pain that resonate through parts of her body. This is in addition to her mouth pain. She is becoming hypersensitive to touch. It’s not consistent but when it occurs, it sends her into fits of rage as she is still having trouble communicating. For example, if the pain is in her right arm she can’t point to the pain because her left arm is still unable to move. She then flails her right arm trying to relieve the pain as well as trying to show us where it’s located. We try to guess calling out what we perceive is the problem and her only form of communication is to lurch forward in her chair, shake her head in disagreement and reach out to hit or grab us to express her pain. Our natural instinct is to rub or massage her but that is now exasperating the issue. I can’t begin to tell you the torment of not being able to “fix” this for her.
Many of you write me on the nights that I post at 3, 4 or 5am. I assure you I’m not playing Free Cell or Solitaire! When my nurse arrives at midnight that’s when I have some quiet time to write my page and do research. This week I have been reading case studies for Nerve regeneration and reconnection in TBI and Spinal Cord injuries. There is so much to be learned in regard to the brains ability to reroute and remap its connections after a traumatic injury. There is an answer out there somewhere that will help us continue to find ways to give Corey the relief she needs as well as techniques that will help us help her continue her progress and healing.
Corey was very uncomfortable tonight. One form of therapy that I know helps is cooking. Tonight we made one of Corey’s original recipes. Gimme S’more Pie ~ created by Corey in September of 2010. Start with a Graham Cracker crust, layer chocolate pudding, peanut butter, chopped Hershey bars, marshmallow fluff, and chocolate pudding, topped with cool whip and decorated with more Hershey bars.. It’s so good; you’ll say…Gimme S’more Pie! We had a good time and it was the perfect distraction for her. Check out the Photo Gallery for the finished result.
Corey when you were little and had colic, we would put you in your car seat on top of the dryer and turn it on. The heat and the vibration would help soothe you; you’d settle down and fall asleep. I have to admit, I’m not sure what tricks to try on nights like tonight when I can’t find a way to console you. All I can say is that we will keep trying to find the tricks that will help you. Sometimes it’s climbing into bed with you and holding you. Sometimes it’s sitting next to you without speaking but you take comfort in knowing someone is there with you. Tonight it was cooking and after you got into bed it was simply holding your hand until you fell asleep.
I can’t say that I know what you’re feeling. I can tell you my heart aches to watch you in pain. In addition to holding onto each other, we can also hold onto the fact that everyday will bring change. I have to smile as I hear Aunt Susan’s words from years ago; “Marie, I promise things will change”…”I never said they’ll get better, I just said they’ll change”!
The good news is we are seeing change and you are getting better. Sometimes the changes seem more difficult than we can bear but once we get through the tough ones; things seem to get better and you make more gains. Today’s 24 hours are over. Tomorrow we begin again. One day at a time kiddo, xoxo