Tuesday, October 14

Watch Out

Today was not a day of epic achievements, but was a good day.  After all, every day is a good day when we sit back and look at all Jackie has endured to get to this point.  I can tell Dr. K and his team are starting to feel more energized and excited about Jackie’s recent accomplishments.  It is not that any of us ever lost hope, just a little steam.  Dr. K usually comes in and sits by Jackie or stands very close to him and asks him age and interest appropriate questions.  Even though they just seem like normal conversation to Jackie, it is a way for Dr. K to get a handle on his cognitive gains including initiative.  Each exam this week has been a positive one.  PTL

Jackie seems like he is falling back into his normal 19 year old pattern of not wanting to get up or be really happy in the morning.  It could also be that today he had an ADL session with Paula.  I’m guessing in Jackie’s mind it would be like getting up at 8 in the morning at college and running a couple miles before his first class; not something Jackie would ever do.  Needless to say, it was time to get up and get moving.  Paula continues to work with Jackie so he can begin to do more for himself.  As with everything, it is slow but steady progress. It is this achievement of independence that will continue to drive Jackie’s desire to keep pushing through day in and day out.  After their session, Becca picked up Jackie for speech.  Breathing exercises, using a plastic contraption that you blow into to raise balls in cylinders was one of the things on tap for the session. I remember my Mom and Dad using these in the hospital post surgeries.  A rest on the second floor terrace was next.  The sun was strong so we mixed catching some rays with comfortable relaxation in the shade.

Jackie worked hard in PT.  Nana and John visited today and caught a glimpse of Jackie walking along the wall in the gym.  They both felt Jackie looked much more alert today.  Jim and I are with Jackie all the time so it is harder for us to see changes from day to day.  Jackie came back to the room and got in bed for a nap.  We all took turns eating lunch outside the room and then got Jackie up to finish out the remainder of his session with Paula. Jackie was close to falling asleep, but never did.

When we help Jackie sit up in bed to get in his chair, we always like to give him some time to get his bearings.  I usually sit beside Jackie on the bed and sneak a hug.  When Nana and Grandma are here, they seize the moment and take over the stabilizing role.  Today was Nana’s turn.  She was on the opposite side of the bed, saw what was going on and said, “It’s my turn for a hug.”  Jackie immediately started to pull himself up and said, “Watch out,” and then he started to laugh.  We all laughed.  This initiation of humor is another big step to healing.  PTL

After OT Nana, Jim and I went out to the second floor terrace for Jackie’s snack. It was a beautiful night. The break was short lived as it was a shave and shower night.  We went back up to Jackie’s room and Nana gathered her things and I walked with her to the train station which just happened to be the same route to the drug store.  Jim and Jackie hung out in the room until I got back.  Then it was time for a shave and shower. Once in bed, Jackie and Jim watched some of the Flyers game.  Even with his glasses, Jackie does not enjoy watching long periods of TV.  Sometimes he will fall asleep just listening to the game vs watching it.

His night was not that restful.  His sleep was blended with muscle spasms and body jumps, the kind that most of us get when we sleep, except Jackie has way more.  A new day has arrived and I hope with all my heart that it is a good one.  Many of us have the choice to make our days good or bad, count your blessings, be kind and make your day a good one!

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”
~Helen Keller


Monday, October 13

Epic Vector

Jackie started the day with a visit from Dr. K.  We reviewed meds and possible side effects that Jackie may be experiencing.  We set a plan and will continue to keep a close eye on Jackie and how he feels throughout the day.

Becca was back and took Jackie to her office for Speech therapy.  They worked on tongue and swallowing exercises.  Then they snacked on some fun things like Cheez-Its.  Becca uses different types of snacks to get a gauge on Jackie’s swallowing function.  He is still only eating soft foods for pleasure at this point. They also continued their review of cell phone usage.

Back in the room and with about an hour to go before PT, we decided to open some cards.  Lately we have been able to read more cards to Jackie than usual at one sitting.  Jackie’s emotions seem to be more under control and the cards help give him a little boost.

Right on time, Erin was at the door and ready for her PT session with Jackie.  Today they did some stretching and then headed up to the Vector. During the session Erin always guides Jackie’s left leg forward and ensures it is in place to enable his right leg to be able to take a step on its own.  She always encourages Jackie to try to move his left leg but ultimately needs to assist him. Today one small step ended up being a huge leap forward as Jackie moved his left leg one time on his own.  PTL  When they came back to the room Erin told Jackie to give us an update on the session.  Using the loudest voice we have heard in a while he said, “I moved my left leg,” and his face lit up with a smile from ear to ear.  It was an epic vector session!

After much celebration with staffers we helped Jackie get in bed for his nap.  Between a couple interruptions and just being too restless, Jackie was unable to sleep.  The time in bed was still beneficial as it gives his body a break from his chair.

During his OT session with Paula they worked on stretching and engaging Jackie’s left hand.  There is more work to be done here as the muscles in his left arm continue to be very tight and pull his arm upward.  By the time the session was over his left hand and wrist were relaxed. Paula plans to use the robot more to help engage Jackie’s left arm.

While Jackie was at therapy Jim and I spoke with the mentor coordinator for our floor.  She arranged for us to meet with a young women who suffered a TBI in a car accident and had been a patient at Magee.  She was able to go back to college to finish her degree and now works and volunteers at Magee. We also met with her Mother.  After our conversation, we believe she can help Jackie as she has been through many of the same things he is going through.  Jim and I may plan to meet with her Mom one more time to gather any parenting advice she can share.

Jackie rested a little in his chair and then we all played Wii bowling.  We have nicknamed Jackie the ‘spare man’ since he is getting good at getting all the pins down with his second roll.

It was then time to get back in bed for his overnight nutrition and for his evening meds.  Today was a great day…epic! PTL

“The first step toward success is taken when you refuse to be a captive of the environment in which you first find yourself.”
~Mark Caine


Sunday, October 12

Jovie And The Surprise

We all woke this morning anticipating the arrival of our family dog Jovie.  An 80+ pound Golden Retriever with an exuberant amount of love to share.  We haven’t seen her since before Jackie’s surgery in early September and could not wait to be reunited once again.  Jim went to the lobby to meet our very good friends who have become our consistent Jovie taxi, and was greeted with a huge furry hug.  Our friends said that she slept most of the way until they reached the city limits.  At that point Jovie was up, looking out the window and I truly believe could sense we were near.

Jim and our friends met Jackie and I sitting on the second floor terrace.  I received a similar greeting as Jim, but it was short-lived as Jovie spotted Jackie. She made a beeline to his chair, put her paws gently on his lamp and gave him kisses as the beautiful reunion began.  I know I have talked about this before, but there is a calming factor that a family pet brings to a household.  It is like an anchor of love that consistently grounds its members, day in and day out.  We are fortunate to be able to experience this feeling miles away from home when she visits. Jackie experiences even more. His facial expression tells it all as he completely focuses on her and somehow pushes the reality of his situation aside.  So many things have changed in his life, but the love of his dog is something that has never wavered, and something he can always count on no matter what he looks like or how he feels.

We all were catching up and enjoying the beautiful fall day.  Our friends had made a lunch date with their friends in the area and would return later in the day to take Jovie home.  We had promised Lindsay that we would share pictures from the day since she and Florent wouldn’t be here. We just got done talking about them when the automatic, sliding doors opened to the terrace and there they were.  They had surprised us with a visit and the tears and fur were flying.  The most special part of the surprise was that Lindsay had told Jackie that they were coming a couple days ago while they were on the phone together, and he didn’t spill the beans. When asked by Dr. K on Friday, if he was having any visitors over the weekend, Jackie simply replied, “Jovie.” The look on Jackie’s face was priceless when Lindsay and Florent walked in.  He had done something on his own, which is rare these days, he had pulled off the surprise. PTL

The afternoon hours went quickly.  It was one of those times you wish you could pause and keep replaying over and over again.  To have our family unit together was so incredibly special.  We cannot wait to get home so these moments can last even longer.  We laughed, we hugged, we cried and got caught up with each other’s lives.  It is always hard to say goodbye, but we are hopefully getting closer to going home and that makes things a little bit easier to handle.

The rest of the day included the usual wheelchair pull down the hall on the second floor and the rests in bed with Jovie by Jackie’s side. I’m hoping these tastes of home continually encourage Jackie to keep staying strong and to realize that it will only be a matter of time until we get there once again.

Around the same time our friends came back to take Jovie home, Jackie’s spasms started to kick in and he was getting tired.  We went back to the room for a quick snack and then Jackie showered and headed to bed.  He had a fairly restful nights sleep, one I hope was filled with dreams of home and a future that is still full of the same goals, just with an extended timeline.

We are blessed with support from so many family members and very good friends.  I just wanted to send a special thanks out to MA.  Our dear friend who has temporarily adopted Jovie.  She has cared for Jovie as if she were her own, and her family and their friends have created an incredibly loving home away from home for her.  We are touched every day by her kindness and hope she knows how much it means to us.

“Don’t wait for extraordinary opportunities. Seize common occasions and make them great.”
~Orrison Swett Marden


Saturday, October 11

Game Day

The only therapy scheduled for Jackie this weekend was Recreational Therapy and for some reason Jenna was not able to work today.  We decided to have our own session and hooked up our Wii system to the large screen TV in the gym.  Before long we were in the middle of a three game bowling series.  It was Jackie against me.  It is common knowledge that our family is highly competitive.  It has never been a negative thing, just something that makes even the smallest game that more interesting.  Needless to say Jackie and I were in a heated battle for bowling bragging rights.  I had asked Jackie when we had played once before if he wanted me to purposefully let him win and he said no.  In fact, if you have even a little bit of a competitive nature, having someone throw a game so you can win is way worse than losing.  Needless to say we had a great time and Jackie was getting much better at using the paddle and releasing the B button on cue with each game. PTL Even though Jackie was getting uncomfortable in his chair, you could tell he didn’t want to stop.  Ultimately pain prevailed and we went back to the room for a break and some banana whip.

While snacking we turned on TV and caught two wildlife shows, one hosted by Jeff Corwin.  We used to watch his nature shows all the time when the kids were younger and Jackie seemed interested.  I’m not sure if it was because of his love for animals or if he remembered Jeff from earlier memories.  Either way it was helping keep Jackie’s mind off of his pain and the uncomfortableness he felt in his chair.

We helped Jackie get in bed for his nap and I headed over to the hotel to shower. When I returned the boys were up.  They both had taken a little nap. After a bit of laziness and lounging in bed we had to persuade Jackie to get up.  After all it was a rainy day and being in bed just seemed like the right place to be.

Once up, we decided to head to the gym again.  I put in some laundry and Jackie and Jim played more Wii.  Bowling was first and then golf.  After several games Jackie’s tolerance was starting to get low so we went back to the room.  Jackie ate a Magnum bar and was still hungry for more.  We ordered some take out and included a side of mashed potatoes and gravy.  Even though we ordered from an Italian restaurant the potatoes were excellent.  We all enjoyed eating and watching some college football.  Jackie was starting to become restless and it seemed as though some spasms were returning to his right hand.  We ended up feeding him the second half of his meal.

After letting his food settle, we helped him get into bed. He had been sweating more than normal in his chair and continued to seem flushed.  Alter about an hour of restlessness we had to change his shirt and pillow cases as they were wet. The dosage of one of his new meds was increased, and we believe this must be the culprit for these new symptoms. It took until midnight for him to truly settle down, but he finally had good periods of rest.

We thank all of you for following Jackie’s marathon to recovery and for keeping him in your positive thoughts and prayers.  Each day and night can include incredible feelings of joy or periods of frustration and sadness.  We like to focus on the joy and hope that each day will be filled with more happiness than the day before.

Don’t give up. Don’t lose hope. Don’t sell out.
~Christopher Reeve


Friday, October 10

A Routine Day

This may sound like a boring title, but to us routine is a beautiful thing.  Jackie’s nutrition now runs until 8:30 in the morning to maximize his overnight caloric intake.  This allows him to sleep in since he doesn’t need to be ready for his first therapy session until 9am.  To try to interject a little bit of fun in the morning, we decided to have a special greeting waiting for Dr. K. One of the staffers had provided Jackie with cans of silly string to use when he wanted to have fun.  Today was a perfect day to get out the cans.  Dr. K and his resident came into the room and as soon as they said hi, Jackie reached under the covers and sprayed them with the stringy mess.  Jim helped to ensure Jackie’s finger was positioned correctly on the can.  We all laughed.  It was a great way to start a Friday.

Becca was off today so one of the newer Speech therapists worked with Jackie.  She took Jackie to her office and they worked on some things that Becca had suggested.  Jackie ate some soft foods under her supervision and also talked about basketball.  Overall it was a good session.

We stayed in Jackie’s room prior to PT and the hour went quickly.  When Erin arrived for PT we felt the need to plan another silly string attack.  This time the victim was Mark.  He was the mastermind behind many recent pranks on Erin so it was now her and Jackie’s turn to get him back.  They hid two cans under a blanket on Jackie’s lap and headed to the gym.  Mark was sitting in the office so they called him out and immediately showered him with string.  Something so silly, but so much fun for all involved.  Getting back to business, Erin and Jackie continued to work on his left leg movement and focused on learning how to use his hip flexors to help lift his left leg.

After all the antics of the morning and two therapy sessions, Jackie was ready for his nap, and actually slept this time.  He stayed in bed for a little longer than usual and then got up for his OT session with Paula.  They did stretching while listening to music and Paula also gave Jackie some ice cream.  He enjoyed every bite!

Jackie then had a visit from a of Mom of one of his good friends from freshman year at Bloomsburg.  She and her sister live in South Philly and stopped by with lots of goodies including Magnum ice cream bars and a sweet Flyers hat.  Jackie wore it most of the night.  After their visit he enjoyed one of the bars and then headed to the shower.

Just like his nap, he found it easy to go to sleep and only woke a couple times.  One of  Dr. K’s past residents happened to be on call and stopped in to say hi.  We had a great visit with her. Jackie even showed off some of his movement in his left leg and engaged in a short conversation.  PTL It was really nice to see her again.

The day seemed to pass quickly even though we followed our normal routine.  Hopefully you can appreciate vs complain about daily routines and may even find a way to interject some silliness.

“Only I can change my life. No one can do it for me.”
~Carol Burnett


Thursday, October 9

The Ride Continues

Did you ever ride a roller coaster and wish you could have stayed on for another ride?  I remember days spent at Hersheypark when I felt that way; the excitement and wind in my hair and face was such a thrill and the ride was over way too fast. On the contrary, TBI has Jackie on a roller coaster ride that he would love to stop.  It is ironic because he actually doesn’t really enjoy riding coasters to begin with. The constant ups and downs keep coming and just as we think it is time to get off and take a break, another hill surfaces.

Jackie started the day having breakfast with Becca.  The trend continued and Jackie struggled with swallowing.  Becca was beginning to have to go down the path of coaching each chew and swallow.  It was becoming laborious for Jackie and certainly not enjoyable.  Since Jackie is getting all of his nutritional needs from his feeding tube, we all decided it was best to take a break from daily meal trays.  We would just focus on cold, soft, snack foods that are pleasurable for Jackie to eat.  As much as this is a step back, it makes sense if you look at the overall recovery plan.  Jackie is still adjusting to different meds and to have him struggle with something he doesn’t have to, does not make any sense.  We are hoping this break will not last long.

Jackie rested in his chair in the room until Paula came to get him for OT.  She was bumping up her session timing with him and splitting it in half as she had to leave the hospital early.  She took Jackie to the gym for the first half of the session and then transitioned him to Erin for PT.  A highlight of PT was Jackie’s left leg movement.  He was actually able to lower and then lift his left leg up and down.  PTL

Jackie was getting tired but we wanted him to stay up until after his last half hour of OT, plus Grandma, Grandpa, Nana and John were here for a visit so we all sat outside on the second floor terrace for a visit, enjoying the beautiful day.  The time went quickly and we returned to Jackie’s room for his noon nutrition.  Then there was a little bit more time left for visiting before OT.  To save Paula some time, Jim and I took Jackie to the gym.  He was visibly tired and actually also voiced the same feeling.  Paula had planned another try at the motorized wheelchair.  Even though he was tired, Jackie wanted to give it a go. Jim and I stayed and participated in the session.  Paula had Jackie maneuver the chair out of the gym, on the elevator and onto the outside sixth floor terrace.  There was much coaching done along the way.  Jackie’s impaired vision is a challenge as well as the fact that he forgets to look to the left.  Jim and I were his targets to help keep him going in the right direction.  Paula stayed by his side to take over the controls when necessary.  Overall he did really well.  It was such a joy to see him laughing and to see the wind in his face as Paula let him pick up the speed on the open space of the terrace. We also joked about not hitting walls and other objects.  Jim and I could see first hand how using this type of wheelchair will help therapeutically in many beneficial ways until it is time to move him back to a conventional chair.  Jackie still needs to get some practice under his belt before he makes the transition, but this is a work out that Jackie will look forward to.

We got Jackie in for a late nap and he fell asleep right away.  He was beat and needed some time to recharge.  After a little over an hour he woke up and finished visiting with his grandparents until they had to go.  Instead of going to the cafeteria, Jackie enjoyed a Magnum bar on the second floor terrace.  We moved up to his room so Jackie could get some meds and then we all watched some TV.  Jackie said he was still hungry so we gave him a frozen dessert we still had in the freezer.  It was a banana and strawberry whip and it is everything that Jackie needs, cold, nutritious and soft.  Colder foods help stimulate the swallowing response and soft foods are obviously just easier to eat.  After eating a good portion of the dessert we got Jackie ready for bed.

We connected with Lindsay via phone for a quick catch up.  We have found that Jackie responds better when he holds the phone to his ear.  To our surprise he had the longest conversation he has had with Lindsay in a while. PTL. Granted he only spoke a couple words, but this was huge progress from the last call.  Lindsay is very good at mixing conversation with wait times of silence for his response.  After they were done, I was able to catch up with both Lindsay and Florent! The night ended with Jackie falling asleep as he watched the opening home game of the Flyers.

Life takes all of us for rides, how we handle the bumps and hills is up to us.  We can choose to complain every step of the way or choose to hold on and ride it out focusing on only the positives.  Jackie is doing just that and this marathon will eventually stop at the station and it will finally be time to exit the ride.

“Success goes to the ones who do. Get up. Show up. Throw up if you have to. Do it afraid, but do it no matter.”
~Toni Sorenson


Wednesday, October 8

Keeping Pace

Today Jackie kept pace with his therapy schedule.  He had some ups and downs, but we certainly know by now this is just to be expected.  Dr. K was in early this morning and we all saw some positive movement in Jackie’s left leg.  PTL. I am hoping that Jackie is internalizing the importance of this progress, as it is the stepping stone to getting functionality back on the left side.

Jackie had an early start with Becca as she took him in the dining room on the floor for breakfast.  We are not exactly sure why, but Jackie did not eat well.  He may have still been tired or it could have been the environment.  Either way, Becca brought him back to the room and felt a little break would be good.  We stayed in the room for a while and then asked Jackie if he wanted some Magic Cup.  This is a nutritionally packed, high in calorie ice cream.  He did and started eating a couple bites.  Becca stopped back in and they finished the session in her office. She said the back half of the session went better and he even ate more.

The sun was shinning so we decided to go to the second floor terrace for a shot of Vitamin D and a cool fall breeze. It was beautiful out plus our little screamer was audible from the playground, all was right in the world.  We reclined Jackie and he took a little nap.

We came back inside a couple minutes before PT was to start.  One of Jackie’s friends bought him a Nike b-ball cap with the word BEAST on the front.  It was a surprise and Jackie loved it.  We were all actually excited to see Erin’s face when she saw him with the hat on, after all she coined the phrase  ‘beast status’.  Needless to say she loved it and had Jackie keep the hat on the entire session.  Timing was perfect as Erin had scheduled the Vector for his work out.  The session went well, fueled by the new apparel. Jackie’s left leg is getting so close to trying to purposefully move or at least be swung into place.  PTL

You would think Jackie would fall asleep after such a busy morning, but when he got in bed for his nap he only rested. Paula picked him up for OT and the two headed to the gym.  It is now time to start working on Jackie’s neck strength.  He has been relying on a fairly large headrest on his wheelchair and it is time to start weaning him off.  Paula put a smaller headrest on his chair and wants Jim and I to keep an eye on how he is doing.  Eventually the goal for coming home will be a chair without a headrest. There was a surprise bonus to the session.  Joey the therapy dog had a cancellation with another patient and was available.  Jackie gave commands for Joey to do all kinds of tricks and of course rewarded her with treats.  Everything was done in the direction of Jackie’s left side.  The hope is that the more he tries to do on that side, the faster functionality may return.

After some afternoon meds we decided to head down to the cafeteria for an early dinner.  Until Jackie starts swallowing a little better, Becca wants us to have Jackie eat the soft stuff.  He enjoyed his mashed potatoes with extra gravy.  The cafeteria was out of Magnum ice cream bars, but luckily I was able to purchase more at a CVS in the city on the way back from an errand.  Jackie enjoyed his treat on the second floor terrace.  He loves the taste while Jim and I love the calories he is consuming.

We headed back up to the room for a shave and shower.  Then it was time for evening meds, and the start of his nightly nutrition.  Jackie’s spasms have continued to reduce in frequency to the point where they are more of a nuisance than a full out sleep stopper.  PTL

Hour by hour, day by day and guided by prayers, positive thoughts and patience, Jackie continues to keep pace on this marathon to recovery.  We just told Jackie that our dog Jovie is coming for a visit on Sunday.  We are all very excited and it should help keep his  spirits up through the weekend.

“We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.”
~Joseph Campbell