Wednesday, June 11

A Phantastic Day

Today Jackie woke up on time and ready for breakfast and morning meds. As soon as he had finished, Becca came in for Speech therapy.  Jim and I left the room and met with our case manager.  She gives us updates on Jackies team meetings held by the staff each Tuesday morning.  She is our point of contact for just about anything.  Today we had a brief discussion on what things may look like post discharge.  We have a couple more weeks to get everything figured out.

Jackie’s speech session went well.  Becca combines the necessary skill building exercises with fun activities.  It is a great way to end his sessions on a positive note.

After speech Jackie stayed in his wheelchair and did not rest in bed.  Lori, the Art therapist stopped by and we decided to have Jackie do individual sessions with her Thursday mornings and then participate in the group sessions Monday evenings.  Shortly after her visit, Paula stopped in and started electronic stimulation on his left shoulder. She gave us a heads up that there was a special visitor at Magee today.  A short amount of time passed and we changed Jackie’s shirt from the Flyers to the Phillies and headed to the gym as it was time for PT and a meet and greet.

Ryne Sandberg, the manager of the Phillies, and his wife were there visiting patients.  We were all able to meet with them, shake their hands and even get a picture together.  Jackie also received a signed card from Ryne which is already hanging up in his room.  Too cool.

Immediately after meeting him it was time for PT.  Erin worked Jackie hard today as always.  There was one break at the beginning of the session where both Erin and Jackie realized they liked the same Usher song.  We found it online and jammed for a very short time listening to ‘Yeah’. After some shoulder shrugs to the beat, Jackie sat on the side of the mat and balanced himself in a sitting position for longer than he ever has before.  PTL.  He worked on transfers from the wheelchair to the mat and also worked on laying down from a sitting position.  Once he was down, he then had to work on getting back to a sitting position.  Seems so easy, but for Jackie it is exhausting, especially when his right side has to help his left side do some of the work.  He is assisted when doing this but the goal is to have him be able to do these tasks by himself.  He finished up PT with standing exercises.  For those of you who golf, I equate it to all the things you have to think about when you line up to hit your shot.  Jackie has many things he needs to remember in order to be able to just stand without falling.  With time it will become second nature to him as it is to us.  It is crazy how many things we take for granted every minute of our lives.  Feel blessed for the little things.

It was now time for lunch.  Jackie’s appetite is the only thing that allows him to stay awake when he is so tired.  It was funny, near the end of his PT session he  became a little unfocused and said, “I smell food”, we all laughed.  We could not smell anything, but the lunch trays were in the process of coming up to the floors.

Jackie ate a great meal and then Paula came in to start electronic stimulation again.  It had been turned off during Jackie’s PT session.  It wasn’t long before his OT session began.  When Jim went to the gym to pick up Jackie he was jamming once again with a bunch of staffers.  I am so glad we are at Magee!

Jackie took a well deserved nap after OT and awoke to the smells of dinner.  As in normal fashion he ate a healthy meal and then the three of us went up to the sixth floor terrace for dessert.  We also rented another movie to be watched in several sessions.  When we got back to the room, Jackie said he was excruciatingly tired.  We got him in bed and he took a cat nap before his 8pm meds.  Jackie was asleep minutes later.  He worked very hard today with only one rest break.

Jackie has come a long way since our first day back at Magee.  I told him before he went to sleep that I loved him and was bursting with pride.  To get out of bed every day and work harder than you ever have before is a sight to be seen, especially for a 19 year old who still struggles to sit, stand and walk.

Hopefully reading this blog gives you a small taste of the reality checks we live and see every day with Jackie and all the other patients at Magee.  I also hope it allows your eyes to see all the good things in your lives and helps you appreciate all of them.