Last night marked the end of the first week that Jim and I took turns sleeping at the hotel. We alternated every other night and decided to call Sunday night Parents Night since we both will stay with Jackie that night. We arrived in Philly on April 2 and last week was the first time we slept at the hotel. Prior to last week we used the room as our base camp and shower location. The hotel is much closer to Magee, so it is a quick walk compared to a longer walk or taxi ride when Jackie was at Jefferson. The only other time we felt comfortable taking turns away from Jackie was for a week or two when we were at Geisinger at the Select Specialty hospital. Now that we can clearly see the care we will be providing for Jackie when we get home, we realize we need to keep our strength and energy level up. We have also worked into a nice routine here at Magee and Jackie is getting stronger, both allowing us to begin this new nighttime practice.
Jim got Jackie and I moving this morning as we were both sleepy, trying to put off the morning tasks that needed to get done. He managed to kick us in gear and we worked to have Jackie dressed and in his chair by the time the breakfast trays arrived on the floor. Since it was Monday, Dr K stopped in and we got caught up with weekend updates. Our biggest news was Jackie’s weight. Sunday’s weight came in at 131 pounds. PTL! Another week of gains. It is so nice to see him filling out. It is the first time since February that his body has finally had a chance to try to recover.
Today was back to his busy weekday therapy schedule. Becca broke up her speech session in two parts. As a total she worked with Jackie on categorizing items, date recall and memory skills. They played Black Jack which is a card game that requires math skills, memorization of the rules and decision making based on the rules. Jackie did a nice job handling all of these required skills. He would not have won much in Vegas, but still had fun.
Next up on the therapy schedule was PT. Erin stretched his legs and worked on transfers. Jackie’s left leg still needs much help from his right leg to move. She finished the session by taking Jackie to the parallel bars. With Erin’s help to move his left leg, and coaching every step of the way, Jackie walked to the end of the bar. Erin positioned a full length mirror at the end of the bar so Jackie could visually see and follow the verbal cues she was giving him. He walked the length of the bar two times. There were a couple times when I felt as if I needed to go catch him from falling. This was in no way mistrust in Erin, simply motherly instinct kicking in. Strength, patience, belief and trust are big requirements for PT success. So proud of Jackie’s perseverance and hard work.
After lunch and rest, it was time for OT. Paula worked with Jackie on sitting balance without using his hands. Since his left hand provides little to no support, his right hand overcompensates and pushes him more to one side. Practicing without hands increases Jackie’s trunk strength and as we all know this is a foundation for walking. Paula also stretched Jackie’s arms and then ended the session with a little hoops shooting session. It will take time to have the left hand assist properly. For now, one handed shots with the right hand is the focus of his exercises. It is wonderful to see a basketball back in his hands.
After another cat nap it was time for dinner and then group Art Therapy. We went up to the greenhouse on the sixth floor and Jackie created two paintings using watercolors in a refreshingly, calm and beautiful setting. A volunteer working with the art therapist is Jackie’s age. She is a past patient at Magee and a very positive young woman. I think Jackie enjoyed being around someone his age who understood what he was going through. I hope they will be able to connect and talk at some point during Jackie’s stay.
We returned to the room and Jim stretched out Jackie’s legs. Then it was time for a shower and then bed. As in typical fashion, Monday proved to be a very busy start to the week.
I cannot begin to tell you how blessed we are for all of the support and well wishes we have received from family, friends, our community and even from people we do not know. We have not had the chance to write one single thank you note, which is driving me crazy, but please accept this as a huge THANK YOU for now. We have unexpectedly taken a path in life we never dreamed we would travel, but it has opened our eyes to the things that are truly important and the people who have lightened our load with each mile of this marathon. PTL!