Hi Everyone,

Corey and I were roommates last night. Our night nurse called off to care for her sick child. Once Corey fell asleep she rested well through the night. (I’m not a nurse but I play one at home) It’s my job to sit with her keeping watch that she doesn’t aspirate in her sleep, change her if needed and roll her from her back to her side every two hours throughout the night so she doesn’t run the risk of skin breakdown.

Our day began at 5am. One of my favorite moments with Corey is when she first wakes up. She typically is happy, smiling and now initiates a conversation. She was surprised to see me sitting next to her. She instantly got excited and greeted me. It reminded me of when she was a baby. As I entered her nursery she’d be playing or chatting away until she saw you and then her eyes would widen, she’d give a broad smile and couldn’t wait for you to pick her up.

The morning ritual includes a bath, dressing for the day and administering the morning medications. By 7:30 she’s ready for a nap. Although Corey initially woke up in a good mood, yesterday took a toll on her. Her mouth pain has increased and she had an upset stomach today as well. We cancelled speech and attempted PT.

Corey’s frustration level was still high during her PT session. She refused to walk today but she did work out on the matte. She had two new firsts; we’ve mentioned working with her to lift her left heel off the matte. Normally she does this barefoot. Today she lifted her left heel off the matte wearing her air casts and sneaker! She raised her heel about 2-3 inches. For you and I that would be similar to tying a 50lb weight to our ankle and trying to lift it. Her second achievement occurred sitting on the side matte. We propped her left knee up so her leg could dangle off the side. We placed a ball in front of her left foot and she made the motion to kick forward. She followed through and tapped the ball; 3 times.

After PT it was off to Bryn Mawr for a follow up visit with Dr. Long. Each visit to Bryn Mawr we run into nurses, therapists and staff that are very excited to see Corey. We lived at Bryn Mawr for 7 months; Corey left quite an impression and was loved very much. They love watching her progress and now that she’s talking, they are elated to hear her voice. We were fortunate to run into old friends as well. As you can imagine living in the facility for that length of time we became close with other patients and their family members. It was good to catch up and see their progression as well.

Corey today starts the 16 month mark. This morning’s therapy and this afternoon’s trip to the rehab was a timely reminder of where you were and where you are today. I know how difficult it is to put everything into perspective but you need to trust us when we tell you that your progress is incredible. Today you tapped the ball with your left foot. Did you know that this time last year you made the same motion with your right foot? I remember this time last year you could only move your right toes. It was the only part of your body that you could control and move. We were in a PT session with Natalie and she said, “If she can move the toes, she can move the foot and then the leg”. Eventually you did and now that you’ve mastered the right side of your body it’s time to focus on the left.

There is a huge difference between going slow and stopping altogether. You have never stopped! Even though the going may be slow, keep going. Small steps will lead you to the same destination as the big steps. When you get frustrated I want you to do me a favor. Look down at your right foot. Kick it as high as you can. Now smile ~ that kick was a tap a year ago! xoxo