It’s been a very long but productive day! Lots of good news…
My day began at 4:30am, wide awake, mind racing for strategic planning. I’m researching the information we need to properly compose the letter to the Senators. I can’t thank you enough for joining this important cause. I will have one posted by Friday at the latest.
Part of the research was locating the contact information and drafting a letter to the medical reporter at USA Today. I should be an investigative reporter…I found him!
In addition, I also was in contact with Channel 10 to finalize what they need to launch their story.
Early birds catch the worm and I was able to reach the BIA founder on her way to work. We discussed the letter to USA Today, the Senators letter, as well as our next step. Our dilemma is do we continue to search for a suitable facility out of state or do we move Corey home? What a blessing it was to meet this woman. Not only is she knowledgeable about the in’s/out’s of fighting for this cause, she is the mother of a TBI survivor. Mother to Mother, she can’t argue with the Pro/Con list I created for the facility in NH. Marilyn is an amazing woman. She is supportive but brutally honest because she’s lived what we are currently going through. She doesn’t hold back and I don’t always want to hear what she has to say but guess what? She says exactly what I need to hear but also gives me guidance to run with the information in my own direction! Marilyn got me all fired up just in time to go out on a full day of sales calls.
This evening when I arrived to see Corey she was very alert. Corey’s night nurse, Julia, returned from a week’s vacation that Corey would have loved! Julia went to Clearwater to watch the Phillies train. She was really sweet and brought back a LET’S GO PHILLIES poster for her room. It took us all of one minute to post it right next to Corey’s bed!
A note from Corey’s Case Manager was waiting for me. Team met today and Corey’s CRS scores fluctuated from 12-15! I didn’t get the rest of the update but that score is good. They are going to call BC tomorrow and ask for an extension until 3/15. Deploy those guardian angels! Although we are preparing for discharge, our goal is to keep fighting for more time at Bryn Mawr because it truly is the best care and therapy Corey needs!
Corey and I worked on something new tonight. She only responded twice (and of course wouldn’t repeat it for Julia) but I know it counts! I drew a YES and NO card. Yes in Bold Black letters, No in Bold Red letters. I held the card in front of Corey moving it in random directions. She visually tracked the card side to side as well as up and down. I asked her if she knew what the word was. If she could read the word, she can use her thumbs up to show me what it says (keep in mind, thumbs up means YES)…she gave me thumbs up for YES and never moved her thumb for NO! This is very exciting and we will make this our homework this week!
Unfortunately, Corey’s night didn’t progress smoothly. She was extremely uncomfortable and we couldn’t figure out why? It’s so difficult to watch her struggle trying to communicate what’s bothering her. At one point we tried to roll her to her side, thinking that she might be more comfortable. Corey let us know that changing her position was NOT the answer. She dug her heel in the bed and refused to roll! She has no trouble communicating her opinion for certain responses! She’s still independent and willful. Keep it up Corey!
I will keep you posted on the article, the reporters, the letter and recovery timeline needed to write the Senators and our next step along with the preparations for both choices.
I know that you all are praying everyday for us, but could you please throw in a few for direction, logic, serenity, courage and strength for all of us. The next few weeks will be challenging…PS – pray I get some sleep too! Maybe we should look into cloning. It might work? Maybe my clone will sleep for me?! Let me sleep on that one…Happy dreams, xoxo