Thursday, October 2

Beast Status

We followed the routine from yesterday and helped Jackie with breakfast prior to speech.  Since he receives most of his nutrition overnight, he is never that hungry in the morning, but he managed to eat almost  an entire pancake and about one quarter of a banana. PTL Becca picked up Jackie and they moved to her office for the session.  Becca continued to work on breathing exercises and repeating names of celebs on the iPad.  Today he repeated 20 names, up from eight during yesterday’s session.  Slowly but surely he is beginning to use his voice more.  PTL

Jackie chose to stay inside during the break between speech and PT.  About half way through we moved to the dining room next door, which was now empty.  The brilliant streams of sunshine coming in the bay window provided the perfect environment to relax.  We were in the middle of watching a funny YouTube clip when Mark came in to get him.  Both him and Erin would be working with Jackie at the beginning of the PT session. Jackie continues to be able to withstand exercises while he is on his stomach.  The therapists ensure his feeding tube is in a position where it will not cause any skin breakdown.  When Jim and I walked into the gym they had just completed walking.  Erin looked at Jackie and told him to tell us how and what he did.  He pounded his fist to his chest.  Erin said, “Now tell them,” and Jackie replied, “beast.”  I’m not sure if you remember this from earlier posts, but Erin only gives out the beast status if the workout was really good and if Jackie worked extremely hard.  Today was a great day in PT!

Not a surprise that the beast was exhausted.  We quickly got him in bed for his nap and noon nutrition.

Paula came to the room to get him for OT.  They did some stretching and standing exercises.  Then they tried something new, a motorized wheelchair. You may think why is he moving to a motorized wheelchair if the ultimate goal is still to have Jackie walk?  We had the same questions.  The chair will actually help with Jackie’s vision, dexterity, spacial awareness and many other things including the fact that it will help give Jackie some independence. Paula said she moved Jackie to the chair and before she knew it he had taken off.  Not a surprise as he was an excellent driver from the very beginning.  His driving skills when he was little in his GI Joe battery powered jeep was impressive, just ask Lindsay.  Needless to say he needs to refine his skills before he is able to officially move into the chair.  He will eventually move back to a different chair for when we come home.  OT had also been a successful session. Paula had Jackie maneuver the chair throughout the gym as the other therapists were cheering him on.  His great day continued.  PTL

Since Jackie was getting tired from all of his hard work, we decided to have an early dinner, but still had time to relax on the second floor terrace for a short time with Grandma and Grandpa.  It was time for their train and also time for dinner.  Grandpa had made his special mashed potatoes which the entire family loves.  We heated half for today and are saving half for tomorrow.  Jackie enjoyed every bite.  I’m sure it reminded him of home and he couldn’t get enough.

After some meds he got in the shower and then went right to bed.  He worked incredibly hard today and his efforts are starting to pay off.  PTL

Jackie normally sleeps well, but he had a rough night. Jim and I believe it is related to possible withdrawal symptoms from one of the meds he was taking in the hospital.  He also worked many of his muscle groups hard today. We will talk with Dr.K in the morning.

“Strength does not come from physical capacity. It comes from an indomitable will.”
~Mahatma Gandhi