Tuesday, June 3

Working on the Basics

Most of us get up every morning, get out of bed, land on two feet, walk to the bathroom, stand in the shower, get dressed and eat whatever we want for breakfast.  All very routine actions that we take for granted every single day.  Jackie can not do any of these things on his own…yet.  He is working hard on bringing back the basics to his everyday life.

This morning started with an early OT session. Paula came to the room and began to work on the morning basics with Jackie.  With the use of a walker, she helped him transfer from his bed to the chair next to his bed.  Then, knowing his limitations, she walked him through tips on how to pull on his clothes as best as he could. Paula then helped him stand at the sink to brush his teeth and wash his face and hands. He was very hungry when he woke up and said that Paula made him work for his breakfast.  This exercise was a gauge to see how far he has come and what steps need to be taken to get him closer to doing the basics on his own.

Speech therapy was next.  Jackie was attentive and focused. He was verbalizing some pretty impressive vocab words.  Short term memory needs some focus. Becca missed some of the session due to a meeting, so she came back for lunch with a Philly cheese steak and fries. Jackie was thrilled and ate the entire sandwich.  Gotta love it!

Right before lunch Jackie went to PT.  Erin worked with Jackie showing Dad how to transfer him from wheelchair to bed with and without the walker. This process is the next important step for independence from the lift we use to transport Jackie to and from bed! Both Jackie and Jim felt that the easiest method was when Dad physically moved him without the walker.  Erin’s session ended with two walks down the gym floor.  The first trip Erin and Paula provided the necessary support and leg guidance.  The second trip Jackie held onto the walker and that allowed him to hold his torso up better so Paula and Erin could focus on other areas needing support.  Each step gets Jackie closer to the freedom he once knew,  PTL

After his fabulous lunch with Becca, Jackie was beat, he went back to bed and slept for 90 minutes. He was up for a while talking with Dad and Dr.. Todd and then nodded off for another 20 minutes!

When he got up he was ready for dinner.  He ate on time tonight and enjoyed his meatloaf and mashed potatoes.  His meds are going well by mouth, so it was decided that his nutritional feeds will be turned off overnight. This is big!  It means that Jackie is eating well enough during the day that he does not need the extra nutrition at night.  We will take it day by day and hopefully the stomach tube will soon be pulled.

After dinner, three of the PT/OT staffers that worked with Jackie at Jefferson came for a visit. It was awesome to see them again!  Jackie has made great progress since he saw them, the biggest being his neck control and with out a doubt the spoken word.  The entire time they worked with Jackie he was unable to speak.  When they were here we reminisced about some of the fun times we had.  Jackie seemed to remember a couple of the details of the stories that were told.

After they left, Jackie turned in for the night.  The boys watched TV for a short period of time before Jackie fell asleep. Since the overnight nutritional feedings have been turned off, this is the first night in months that he did not have to sleep at a 30 degree angle.

When you are rushing in the morning and are feeling stressed or grumpy or angry, please think of Jackie and be grateful for those very simple morning routines you take for granted, it just might help you have a better day.

Thank you for following Jackie’s story and for the love and support we feel every day.