Hi Everyone,

PT update;
We’re not sure what our plan will be to submit for more sessions. The medications changes have severely affected Corey’s performance levels. If we submit immediately, it will look (on paper) that she has regressed. The issue is not knowing if the person reading the submission (with the supported documentation about the influence of the medication changes) will actually read the supported information or will they just look at the numbers that have significantly declined.

On a positive note, Natalie is beginning to see an improvement in Corey’s walking since last week but overall she’s moving at a much slower pace.

OT update;
Today we worked with a substitute therapist. Ruth worked with Corey 4 years ago when she was inpatient. Both Corey’s arms and hands were contracted and locked. Her range of motion was non-existant. Corey had no control of her torso or head. She was not speaking. As Corey says, ‘I was a mess!’ – ‘a lump of love’.

Corey has full motion and range of her right arm. Since the botox shots in her left shoulder and elbow, she is gaining range of motion and strength in her left arm.

NEW 1st’s update #1;
I believe this mornings first is directly related to the medication changes.

Saturday, Corey and I went to visit one of my girlfriends and we spent the night. Where ever we go or whomever we visit, Corey is very present. She listens to the conversations, interacts, interjects and is engaged in the moment. Unfortunately, she forgets the experience when we leave and/or move on to another activity and this is due to her short term memory loss. When we travel to visit family or friends, Corey usually sleeps in later then usual the following day. I call it her travel hangover. Any distance beyond an hour, change of routine, new experience and/or busy event causes fatigue.

Corey woke up at 11:15 this morning (Monday). I was teasing her.
M-hey sleepy head, guess who slept until lunch time?
C-I guess I needed it
M-it’s normal, especially after we had such a busy weekend
C-it was busy
M-can you tell me why it was so busy?
C-we went to your girlfriends house and slept over
(I was in shock)
M-Corey, my girlfriend had a dog. Do you know her name?
C-(without hesitation) Bailey
M-I am amazed! This is the first time you’ve remembered what you did on a weekend.
C-(all smiles) Do you want to hug me?
M-(I laughed) ABSOLUTELY!
I stood Corey up and gave her a hug. Holding her tight I said, “Corey I think your memory is getting stronger. I feel like you’re coming back to us. we’ve waited 4 years for this”
C-(pulling away to look at me) I’ve always been here mom!

New 1st #2;
This afternoon during her OT session, Ruth asked Corey if she could untie her shoes.
C-No I can’t
M-Yes you can, you untie them every night?
C-(speaking to me about Ruth) No, I don’t want to because then she will make me tie them and I can’t do that yet.
M-Okay, but Ruth didn’t ask you to tie your shoes, she asked if you could UNtie them. Go ahead and show her.
(Corey reached with her right hand to her right shoe and untied the right laces. When she started to move to her left shoe…)
M-use your left hand to untie your left shoe

She hesitated, looked up at me and silently went back to the task. The room was silent as we watched her thinking, concentrating on moving her hand, opening her fingers, controlling her pointer finger and thumb to grasp the end of her shoelace. Her fingers were not synchronized and shook spastically. Her focus and concentration to open and close her fingers in a pinching motion took nearly 10 minutes when she sat up, took a deep breath and stared at me with that unspoken “this is hard” look.

M-I know this is really hard. I also know you’ve never done this before with your left hand which is why I asked you to try, just to see if you could do it and guess what? YOU’RE SO CLOSE…please try again, I know you can do this!

Corey leaned forward and bent down to reach for the end of the shoelace. She missed a few times grasping the loop and trying to pull up. 10 more minutes passed.

M-you can do this, not the loop, grab the end of the lace and if you have to, you can use your right hand to help.

I thought Corey was going to cheat and use her right hand to untie the shoelace but instead she used her right hand to steady the left. She controlled her grasp and wrapped her left hand around the end of the lace and pulled up…she untied her left shoelace with her left hand.

So many people ask, ‘How do you keep going’?
Today is the answer. Everyday is a struggle. Everyday is incredibly hard. Everyday presents new challenges, fears, worries and uncertainties. BUT everyday also presents something new, something that stands out to remind us today is better then yesterday, last week, last month, last year and certainly better then it was 4 years ago.

We live each day looking for that one ‘something’ that renews our strength. The new 1st that inspires us to try again, to keep moving forward. It’s day’s like today that hasn’t resolved the challenges, fears and worries but reminds us the meaning behind never give up and never give in…it’s a matter of time, xoxo