Monday, September 29

Seeing Clearly

Jackie slept in as long as he could before speech started. He ate his breakfast with Becca as they continue to work on improving his swallow function.  They used images  on the iPad for voicing exercises and even reviewed basic cell phone functionality.  When they were done we went to the second floor terrace for a break before PT. My phone vibrated about 10 minutes later, it was Becca, Paula was looking for us.  They were able to schedule an eye appointment with the doc for 10am.  We quickly got to the gym and Jackie proceeded to have a very through eye exam.  We were hoping that his vision improved post surgery.  The exam mirrored what we are seeing throughout all of Jackie’s body.  The surgery did not create instantaneous improvements, but with time things will get better.  We were able to confirm that there was no retina detachment which is good news, as surgery would have been necessary if that was the case.  PTL. Jackie’s brain injury is the catalyst for the slowed muscles in his eyes.  We are hoping with brain healing  will come clearer vision.  In the meantime the doc wrote a prescription for us to get a new pair of glasses.

While Jackie was at PT Jim and I researched some of the local retail eye outlets  as we wanted to get moving on his new glasses as soon was we could.  Jackie had a good session with Mark.  After some stretching exercises Mark assisted  Jackie with a short walk in the gym.

Back in the room we followed routine and Jackie enjoyed his nap.  Paula gave Jackie a little extra time to rest and started her OT session with him about a half hour late.  While Jackie was working with Paula, Jim and I walked to Eye Encounters on Chestnut.  At first they said they would need to see Jackie, but after reviewing the prescription were able to put the order through after we picked out some frames.  Within 5-7 business days Jackie should be wearing his new glasses.

After we all reconvened in Jackie’s room, Holly our Dietician reviewed Jackie’s nutritional needs.  Jackie’s weight stayed the same from last week to this week.  It is a toss up whether to increase his nutrition amount through his feeding tube or give him the chance to eat more. We decided that letting him eat more on his own is best as the ultimate goal is to wean him off the tube as soon as possible.

Jackie was getting hungry so we headed down to the cafeteria for dinner.  He ate almost all of his mashed potatoes and some of his meat.  He also left room for a 340 calorie Magnum ice cream bar which he enjoyed on the second floor terrace. PTL

The day had been a good one.  One with hopes of seeing clearer and continuing baby steps forward. Your positive thoughts and prayers are being heard and felt and are appreciated more than you will ever know.

“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.”
~Michael Jordan


Sunday, September 28


After yesterday’s long but wonderful day we weren’t sure how Jackie was going to feel.  He had three therapy sessions today, two of which were in the morning.  We let him sleep in as long as we could.  We went to the gym with him for his 9am PT session since we did not know the therapist.  She was a very nice, gentle staffer who has works at Magee’s outpatient facility.  She worked well with Jackie and did a nice job of letting him know everything she was doing and why.  By the end of the session Jackie took a couple steps by the wall and then using the rail.  PTL

After a quick stop in his room to get some meds, we went to the second floor terrace so Jackie could rest in the sunshine. He had his ear buds in and drifted off to his favorite music.

OT was next and once again we accompanied Jackie to the gym. One of the younger therapists was assigned to Jackie.  We had seen her before in the gym, but she never worked with us.  She recently moved to the fifth floor gym for rotational learning.  Jackie enjoyed her company.  They both played basketball in high school.  Stretching was first on the agenda and then trunk work.  Putting a balloon on the overhead lift allowed it to be repositioned in different places so Jackie had to continue to reach further to get it.  Then something small but incredible happened.  Jackie ever so slightly moved his left arm to tough the balloon.  Jim and I both had a tear in our eye as we clapped loudly to celebrate. PTL This is such a hopeful sign that with time, his left side will re-engage.

To our surprise Jackie’s determination was getting him through the day with great results!  Since his speech session was in just an hour, we went back to the room and kept Jackie in his chair.  He had to get some noon nutrition anyway, and weight shifts allowed him to stay comfortable.  We knew his weekend speech therapist as Jackie has had her before.  Becca had prepared her with everything she needed and ultimately it was a good session with a decent amount of verbalization.  PTL

Jackie was now extremely ready for his nap.  He fell asleep right away and slept peacefully.  When he woke up it was time for the Eagles game.  Jackie was hungry so we ventured down to the dining room and ate and watched the game with many other bird fans.  Since this is still a fairly new experience for Jackie,  I asked him if the noise and activity bothered him.  He responded with a thumbs down.  We are making progress!

Next up was a shower and then bed. Jackie surprised us today.  His determination drove more baby steps.  At one point during OT when he was starting to engage his left arm he began to spasm on his right side and cried out.  After a little bit of muscle massaging he tried engaging the left arm again, knowing that pain could follow.  He could have just given up, but he kept pushing knowing it wasn’t going to be easy.  None of this is easy.  But on days like today, will and determination won out.  PTL

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.
~Martin Luther King Jr.


Saturday, September 27

Double Surprise

All three of us were excited for Saturday to finally be here.  Lindsay and Florent were coming and Jackie did not have any therapies scheduled until Sunday.  Jim and I took turns and quickly ran over to the hotel for showers.  We are still shift sleeping through the nights and haven’t returned to our routine of sleeping at the hotel every other night. Jim came back from the hotel about half an hour before they arrived.

Once reunited we had some time to catch up before Jackie took his nap.  We were trying to stay as close to Jackie’s routine as possible.  I joked with Jackie and said that I was going to lay down beside him and nap with him.  He immediately filled the empty space on his bed with his arm and knee.  Then Lindsay asked if she could lay there and immediately he lowered his arm and leg so she could lay beside him.  She held his hand and he almost instantly fell asleep.  During his nap Lindsay said that his grip never stopped as she had made several attempts to move and let him sleep on his own.  Ultimately he did not sleep as long as he normally does but it was better than nothing.  We decided to order in some lunch.  When it arrived we had moved Jackie out of bed and decided to sit on the second floor terrace and enjoy the beautiful day.  We went through the gym as I wanted to pick up a drink for Jackie.  When I left the kitchen area Jim said we were going out the back way.  I walked by the conference room connected with the gym and heard the word ‘surprise’. I was completely and utterly taken back by what I saw.  A total of 15 of our family members, including Lindsay and Florent, were waiting to see us in the decorated conference room.  Jim had emailed some of the family a week or so ago when he thought of the idea to have a big gathering not only to celebrate my birthday but also so Jackie could spend time with some of the family.

So what was the double surprise?  Since Jim’s birthday is in early October, the family turned it into a double birthday party for both of us.  Needless to say it was an incredible day.  Jim and I kept a keen eye on Jackie as this was the largest gathering he had attended since February.  You could tell on his face that he was enjoying himself.  Our families had brought back a piece of his life that had been missing.  He took naps here and there but stayed strong and made it through the entire party.  A huge and impressive accomplishment. PTL

We all went down to the lobby and said our goodbyes. Lindsay and Florent were able to stay a little longer. I think if they had to leave with everyone else Jackie would have shut down.  Lindsay’s presence calms him. I can’t even begin to explain it.  We headed to the second floor terrace for just a quick dose of fresh air. Florent opened presents since his birthday was early in September, Lindsay opened a birthday gift that arrived late in the mail and Jim and I opened gifts from Lindsay and Florent.  Jackie enjoyed watching and listening. His birthday is not until January.

We headed back to the room and it was obvious Jackie was beyond exhaustion.  We got him into bed right away and he immediately fell asleep.  After a little while, Lindsay woke him to say goodbye.  Even though he was sound asleep he woke quickly to her voice and said, “I love you.”

Blessed is the word that sums things up for today. Blessed that we still have Jackie, blessed that Lindsay and Jackie have a special bond, blessed that we have an incredible family and blessed that each day brings new hope for continued recovery.  PTL

“Families are the compass that guide us. They are the inspiration to reach great heights, and our comfort when we occasionally falter.”
— Brad Henry

“You don’t choose your family. They are God’s gift to you, as you are to them.”
— Desmond Tutu


Friday, September 26

Vector Bound

Today started out differently right from the start.  After many discussions with Jackie’s team members, we decided it was time for Jackie to take some control over things that he could.  The night before Jackie picked out his own outfit, vs me picking it out for him.  We had wheeled him up to his closet and he seemed to enjoy reaching in and selecting what he wanted to wear.  Something so basic, but so meaningful to Jackie who is slowly but surely taking back control of his life.

After morning meds he had his speech session with Becca.  She worked with Jackie and together they firmed plans to slowly introduce Jackie’s phone back into his life through very limited use of basic functionality and music.  Up until this point we were deciding when to listen to music and usually just used a random sort to play some songs.  Now we will let Jackie take control over this and he can even use his headphones whenever he wants. PTL. Another simple thing with huge impacts on Jackie’s recovery.

Jackie decided to rest in the room prior to PT.  Mark was off today, so Michael spent time with Jackie. He has worked with Jackie before and has a calm, positive approach that works well as a motivator for Jackie.  The session started with some stretching and moved to standing, squatting and step up exercises.  Then it was time for a trip to the third floor to get back on the Vector machine.  It had been quite some time since he used this technology as he had been so lethargic prior to surgery.  I was a little apprehensive on how things were going to go, but Jackie stepped up to the plate and worked harder than we all thought was possible.  Michael took things slow.  After a short series of steps, Michel gave Jackie the choice to be finished or walk some more.  Jackie gave a thumbs up and took more steps.  PTL

As you probably could guess, Jackie was exhausted and fell asleep quickly after the session.  Jim ran an errand so I was planning to have Natalie, who was covering for Paula today, help me get Jackie out of bed.  What happened next in the whole scheme of things is minor, but big for Jackie.  He usually reaches over and holds onto the bed rail to assist as we pull him up to a sitting position.  Today he actually used his abdominal muscles and his right arm and almost pulled up by himself. He did it once again on the mat during his session with Nat and ever so slightly reached for an object with his left hand.  PTL

After the session our moods were high and we spent a while on the second floor terrace rewarding Jackie with a nap in the fresh air.  We are getting accustomed to all of the sounds of the city.  The stand out distinctive scream from one the kids on the playground at a school close by served as a soothing and happy sound for Jackie.  Things would just not be right if we didn’t hear her.  Before we knew it we had to head back to the room for some meds and then headed down to the cafeteria for dinner.  Tonight Jackie ate more of his meal and even enjoyed three quarters of an ice cream bar.  PTL As time was getting away from us, we headed back up to Jackie’s room so he could get a shower before getting in bed and starting his nightly nutrition.

Today, was full of one baby step after another.  I’m not sure if our conversation yesterday helped fuel his passion for getting better or if it is the fact that he is finally getting the nutrition he needs and his body is flushing out many drugs from his hospital stay.  Truthfully it is most likely a combination of all of these things and it is a beautiful thing to experience.

“The difference between the impossible and the possible lies in a man’s determination.”
Tommy Lasorda


Thursday, September 25

Back To Routine

It feels good to be getting back into the Magee routine.  Each day we see just a little bit of improvement.  PTL Motor skills are still trumping speech communication, but leaning back on patience will allow us to wait for the right time for Jackie’s voice to kick back in.

Jackie ate a small breakfast with Becca and together they worked on a special project, a birthday card for me.  While making the card Jackie become emotional and was sad that I had to spend my birthday in the hospital.  When he came back to the room Jim, Jackie and I had a tearful talk and we were able to say things to Jackie that we have been meaning to say but it was never the right time.  Starting to sort out all of these emotions, although taxing, is a good thing.

Next up was PT.  Mark picked up Jackie and headed to the gym.  Mark took it easy on Jackie since the morning had been emotionally draining.  He stretched his muscles and worked on other basic PT exercises.

After PT it was time for Jackie’s nap.  As I have mentioned before, Jackie’s new schedule allows for an hour and a half nap once a day.  We make every effort to maximize that time.  Paula came in to get him for his OT session after he woke up.  One of the focuses for the session was Jackie’s vision.  It is important that we get his vision evaluated to see if anything has changed post surgery.  She worked with Niki on an initial assessment and set up an appointment for Jackie to see the eye doc on their next trip into Magee.

We walked downstairs to say goodbye to Grandma and Grandpa who had come to spend the day with us, then we went to try our first dinner together in the cafeteria.  As soon as we wheeled Jackie up to the table he went into a muscle spasm.  We got him back upstairs and worked him through it.  Attempt two was very successful and a great next step for Jackie in order to get used to eating in a more social environment. He didn’t eat much but the experience was positive. PTL

Overall the day was a really good one.  My birthday was ultimately one of my best.  I was blessed to be here with my boys and will be spending the day with Lindsay and Florent on Saturday.

“The best thing about the future is that it comes only one day at a time.”
Abraham Lincoln


Wednesday, September 24

Appointment Day

Days that Jackie has an appointment always turn out to be adventures.  Today was no exception.  Jackie got up a little early this morning because he was going to have speech at 8am.  Becca took him into the dining room to have breakfast with the other patients.  This was another trial to see how he could eat in a louder, busier environment.  He did well.  Based on this Jackie is getting one step closer to a regular diet and we have been given the green light to eat dinner with him in the cafeteria every night.  PTL. We will start this tomorrow.

When Jackie has his follow up appointments with his neurosurgeon we like to get the CAT scan on the same day.  We were picked up by the transport company in a wheelchair accessible van and taken to the neuroscience building for the CAT scan.  Our driver was really nice and drove slow, avoiding as many potholes as possible. During the time we walked into the building and walked out when we were finished, we saw a handful of Jackie’s nurses from Jefferson.  Many of them were purchasing the new uniforms that would now be required for them to wear at work.  It was odd but wonderful to see them outside of the hospital setting.  The CAT scan was quick and painless.  We walked across the street to the building where Jackie’s post surgery follow up appointment was scheduled.  We were almost 2 hours early.  The office staff said they would try to get us back as soon as they could, but we only went back 15 minutes ahead of schedule.  Between weight shift reclines in his chair and standing breaks, we managed to work Jackie through this tiring period of time.  Right before we went back we ran into a Mother and son who looked familiar.  The young teenage boy had been in the NICU during part of the time Jackie was there in April.  I approached her and she remembered me.  As moms, we shed some tears together in the NICU waiting room.  Dr. E had removed a large tumor from her sons sinus cavity near the brain and he had made a full recovery.  I could tell she had wished the same for Jackie, but it will just take a little longer for him to get there.

It is always great to see Dr. E, our neurosurgeon with the personality of a GP.  We have become familiar with most all of his residents and today we saw one of his senior female residents who we have come to know and really like.  She saw Jackie first and gave us the awesome news that his CAT scan looked good!  PTL!!!  At this point, Jackie seems to be be shunt independent, meaning we can keep it turned off!  She proceeded to take out all the stitches and staples in his head.  Jackie is such a trooper, he has been through this drill so many times he doesn’t even flinch.  Dr. E then came in and we were able to get all of our questions answered.  We plan to follow up with him one more time before we head back home.

We then proceeded to wait another 2 hours until the transport vehicle picked us up and took us back to Magee.  There is always a valid excuse why they are late, as to whether I believe it is another story.  By the time we got back to Jackie’s room you can only imagine how tired he was.  We managed to have him eat a small snack before getting a shower and heading to bed.

It had been a very long day.  We feel incredibly blessed by the CAT scan results and will continue with our mantra of prayer, positive thoughts and patience.

Great difficulties may be surmounted by patience and perseverance.
~Abigail Adams


Tuesday, September 23

Settling In

Jackie woke this morning after a good night of sleep.  He also consumed the  highest amount of nutrition overnight to date.  PTL This is so important as it fuels his body for the day that lies ahead.

OT was first today with an ADL ( activities of daily living) session with Paula. This is a necessary evil.  Something so basic but something so hard for someone with a TBI.  For Jackie it is exhausting and I’m sure depressing.  Paula told us that actually learning to walk again can be easier for the brain than getting dressed.  She sent Jim and I out of the room as it is hard to watch.  With every ounce of my Mama Bear instinct, I want to put his clothes on for him.  Although that is the easiest thing to do, it is the worst thing for Jackie’s recovery.  The session went ok, but Jackie’s muscle tightness continues to hamper forward movement.  The hospital stay set Jackie back. He has been here before and can get back once again.

After the session was over we went to the 2nd floor terrace for a dose of vitamin D.  The air was brisk, but the warm sun and a cozy blanket created the perfect environment for a nap.  Jackie needed it after pushing through ADLs.

We got back to the room just in time for Mark to pick up Jackie and take him to the gym.  Mark knew Jackie was going to be tired from his session with Paula and also knew we were going to have a long day tomorrow with tests and a doc appointment.  He purposefully made the session a little bit easier than normal including stretches and standing exercise. This was just what Jackie needed.

With Jackie’s new schedule, his reward for getting through the morning is a nap.  He only has 1.5 hours to rest before the afternoon schedule kicks in.  It never fails, we always seem to have interruptions. Jackie is getting very good at sleeping through them.

When he woke up it was time for Speech.  Becca had switched her session timing with Paula and decided to see if Jackie was hungry for a late lunch.  On the menu was a chicken salad sandwich, chips and a cookie.  Jackie ate a couple bites of the sandwich and had a few chips, but focused most of his energy on the cookie.  Even though he is not that hungry, he is starting to get back to eating the foods that are on a normal diet.  PTL

To celebrate the end of therapies, we ventured back out to the second floor terrace.  Once again the day did not dissapoint.  Jackie napped on off in the warm sunshine.  The conditions seemed perfect for a Starbucks beverage.  I took a quick stroll and returned promptly with drinks for everyone.  Even though he did not drink much, Jackie throughly enjoyed his strawberry smoothie.  I think it made him feel like he was getting back to his new normal.  PTL

We came back to the room, watched a little TV and then helped Jackie get ready for bed.  Tomorrow Jackie has a  CAT scan in the morning and a follow up visit with his neurosurgeon.  Enjoy your day, be kind and don’t take anything for granted.

Nothing great was ever achieved without enthusiasm.
~Ralph Waldo Emerson