Saturday, January 31, 2015

Steps Forward

As I sit in the family room while Jackie naps, I find myself counting my blessings. I know that seems hard to believe after all we have been through. Would I change things if I could, absolutely, but that is simply not possible. Instead the best way to live is day by day, not looking back and not looking too far forward. Feeling grateful for all that we do have is our daily approach to life. Our faith, family, friends and community continue to make this doable each and every day.

Since I am no longer posting on a daily basis, I have many updates to share. The biggest ones are a result from our one day trip back to Philly. Jackie had follow-up appointments with both his neurosurgeon at Jefferson and Dr. K at Magee. The morning started with a CAT scan. It surprised me, but Jackie said he did not remember any of his countless other scans. Many members of the radiology staff remembered us as we were quite the regulars. After the scan we wheeled Jackie across the street to his Neurosurgeons office. To say the least, the doc was very pleased with Jackie’s progress. Our next follow-up is scheduled for July. PTL

I can’t tell you how wonderful it felt to get in our own vehicle to drive Jackie to Magee versus waiting for sometimes hours and then loading him up in a transport vehicle. Walking into Magee was like going back to our temporary home. Jackie put it best when he said it was the people he missed the most. We agree. We didn’t get to see everyone, but did see all of his therapists. They became our friends and were so instrumental in getting Jackie to where he is now. Tears were shed as they witnessed Jackie’s progress. We also spent some time with Dr. K. He has always been positive about Jackie’s chances for recovery and was happy to see all of the changes in just two months. Just as he had done once before, he got Jackie involved in a conversation and then removed his peg tube. PTL. Jackie wanted it out so badly, but knew there was a chance it may have to stay in. Needless to say, Jackie was stronger than I ever would have been when it was removed and barely flinched. He is now tubeless and could not be happier. It had been an incredibly long but awesome day. Jackie had his best night sleep yet as he could now move freely in his bed. We are scheduled to go back to Magee in April.

We are currently working on getting Jackie involved with as many therapies as possible, always keeping his energy level in mind. His therapies at Penn State Hershey Day Rehab are going well. Jackie’s PT knows how desperately he wants to walk. She reminds us of Erin from Magee, in tune with everything that needs to come together in order for him to take his first independent steps. She and the PT staff work with him on many things to get him there. At the end of the last couple sessions she helped him walk with a cane. A huge step forward for Jackie! PTL Granted without her support he would fall but each session he gets closer and closer to his dream. Speech, OT and Recreational therapy are also going well. Jackie is now back on a regular diet and continues to work on activities of daily living. Jim and I still assist him with mostly all daily tasks, but similar to PT, each day brings more improvements. Next week we are adding aqua therapy to Jackie’s schedule. He will be going to The Hetrick Center and will be using one of their HydroWorx pools. Two therapists will initially be in the water with him. The pool floor raises up to allow him to transfer via wheelchair into the pool. Then it lowers and the floor becomes a treadmill. The warm temperature of the water and the fact that he will only feel 30% of his body weight should help engage his left side even more than land exercises. Starting with just a half hour session will be extremely tiring, but will be the only therapy he has that day.

In reference to TBI awareness, a good friend of mine from college told us about Kevin Pierce, an Olympic hopeful snow boarder who fell and suffered a TBI. He was right on Shaun Whites heels in fact, he beat him in many events leading up to the 2010 Winter Olympics. An HBO documentary, “The Crash Reel” is about Kevin and his accident. Jim, Jackie and I watched it and even though each TBI is different, it is amazing how some of the daily struggles post TBI are similar. Kevin and his family started the LoveYourBrain Foundation in hopes to help improve the lives of people affected by brain injury. If you are interested, check out the documentary and Kevin’s site, LoveYourBrain.org.

Our thanks continues to flow to so many, for fundraising events, dinners, visits, words and books of encouragement, shoveling snow, and continued prayers. Watching the national news can be depressing and even thinking back to what happened to Jackie makes you wonder what the world is coming to. But we can tell you from our experience that there are a multitude of really wonderful people still out there. We are truly blessed to know and have felt their love.

“You can’t stop the future
You can’t rewind the past
The only way to learn the secret
…is to press play.”
― Jay Asher

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January 7, 2015

Twenty

Jackie reached a new milestone on January 3, his twentieth birthday. It was a day of celebration, a day to look forward to a new year full of recovery and promise. Looking back he really only enjoyed 51 days of being 19, the remaining 314 days of his 19th year need no description. Lindsay and Florent helped celebrate which made the day even that much more special. Additional family celebrations are being scheduled, we just need to space them out a bit. We are always cognizant of the fact that he tires easily. Time still remains the biggest healing factor for TBI.

We have truly settled in to life at home and it is the best feeling in the world. Jackie is enjoying home cooked meals and continues to add more to his diet. He has had a healthy weight gain since he has been home and continues to increase his liquid intake. PTL

The transition to Hershey Day Rehab is also going well. Electric stimulation therapy is being used on both his left arm and leg. His sitting balance continues to improve and his work on transfers continues. There are actually three other Magee ‘graduates’ that are also enrolled in Hershey’s day program. One of the patients told Jackie today that he already notices improvement in Jackie since the first day he saw him at Hershey. This is sometimes tough for us to see since we are constantly with Jackie, but so wonderful to hear. PTL

We are still working on his short-term memory as he asks the same questions over again at times, but are helping him figure out the answer on his own. He knows it, he just doesn’t force himself to use his brain to think hard enough. His voice is improving, except when he is tired which is always the case on the nights we are home from therapy. He is starting to be more verbal in conversations, even if it is just a couple words here or there. When it is just Jim, Jackie and I, he sometimes comes out with one liners that make us laugh really hard. I cannot tell you how good that feels.

We still do not look too far ahead, as we celebrate each day, rising to daily challenges and smiling at small victories. We continue to be blessed with so much support and love. Please know how thankful we are and how much it means to us.

“No stars gleam as brightly as those which glisten in the polar sky. No water tastes so sweet as that which springs amid the desert sand. And no faith is so precious as that which lives and triumphs through adversity. Tested faith brings experience. You would never have believed your own weakness had you not needed to pass through trials. And you would never have known God’s strength had His strength not been needed to carry you through.”
― Charles H. Spurgeon

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Thursday, December 25

A Season For Miracles

No matter what your religion or beliefs, we sometimes hear or experience miracles in our lives. As our family celebrates the miracles of Christmas, we are also celebrating our own miracles. From the birth of our first child, Lindsay, we have learned many things about the fragility of life. She was a preemie and as first time parents we experienced more than most with our share of intensive care stays and ambulance rides. Lindsay fought through a rough beginning and has blossomed into an incredible young women. Jackie was healthy from the start and full of life until a senseless act of violence changed that on February 23, 2014. He has now been our focus and the fact that he is still with us, a miracle.

For those of you who have been reading my blog, I apologize for the delay in posts. After being home for nearly a month, we are finally getting settled in and are so blessed to be here. PTL We are now familiar with our new routine and Jackie could not be happier to wake up in his own bed, nudged along many mornings by Jovie, our Golden Retriever. Our transition from Magee Rehabilitation Hospital to The Penn State Hershey Rehabilitation Hospital Day Program has been a smooth one. We are so grateful to Magee for their months of work with Jackie to get him to this point and look forward to the weeks ahead with the team at Hershey.

Physical Therapy, Occupational Therapy, Speech Therapy and Recreational therapy continue to be part of Jackie’s rehab schedule. Jackie is working on standing and sitting balance. The Hershey team is also working with Jackie to learn how to make transfers on his own from his wheelchair to the mat or to a chair. Strength and balance are still needed before this task can be completed. Braces on his left arm and leg are starting the long process of stretching out muscle tone and tightness. Different walkers are being tried to give Jackie the best aids for walking assistance. Walking on his own without assistance from a therapist will still take some time.  Although a huge mental struggle, Jackie played a game of backgammon on Monday during rec therapy. With much coaching he was able to get through the game and ended up winning at the end with a clutch doubles throw. He was absolutely exhausted by the time we were in the car for the 45 minute trip home. Jackie seems to be withstanding the commute to and from rehab well, but I’m sure it tires him more than we know. Although, just being out and in the car has got to make him feel normal again.

Appreciating all the things we used to take for granted seem to be the norm for our every day life. I hope your holiday is filled with family, love and laughter. Life is too short and unpredictable to have it any other way.

We continue to receive support in so many different ways. Thanks to all of you for bringing tons of joy to our lives.

“Rejoice in the spirit of Christmas which is Peace, the miracle of Christmas which is Hope, and the heart of Christmas which is Love.”
Unknown

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Thursday, November 27

Home At Last

Tuesday night Jackie slept in his bed for the first time in nine months and two days. PTL He ate dinner at the kitchen table and watched TV from a recliner. Jovie, our golden retriever, would not leave his side. Now he starts yet another leg of his journey to recovery. After taking a few days off, he is going to start therapy at a day rehab. It is uncertain at this point how long those sessions will last. After day rehab he will move to an outpatient therapy program, confirming the fact that Jackie’s recovery is a marathon not a sprint.

As we celebrate Thanksgiving, I wanted to share our thanks to so many of you. For all of Jackie’s caregivers, for everyone who has said even a single prayer, for those who have sent positive thoughts our way, to all who have donated or ran fund-raising events, we thank you. To all who have sent cards especially those of you who send many cards we thank you. To our family and friends who have gone above and beyond in absolutely every way possible, we are humbled by your love and support.

Our lives have changed forever and at the same time have been touched by so many. We have met and made some wonderful new friends and we feel incredibly blessed today. Jackie made it to his Grandparents house for a short visit today. I cannot express how wonderful it was for Jackie to be part of a normal family gathering. PTL We are transitioning well to caring for Jackie at home. Magee did a terrific job of preparing us. There was not one thing that they missed. We will miss all of our friends there.

I won’t lie, caring for Jackie at home is demanding but we are so thrilled to be here it doesn’t matter. As with everything, we will get settled into a new routine and things will run like clockwork.

I hope you all were blessed with days full of family fun and friendship. Now that we are home, I plan to continue posting updates but I may just post one or two a week and I’ll try to post on the same days each week.

Thanks again for following Jackie on his journey. His progress has been fueled by all of you and for that we are extremely grateful.

“Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have, you will never, ever have enough.”
~Oprah Winfrey

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Thursday, November 20

Perseverance Pay Out

Jackie did not sleep well. He was up more than usual so we let him sleep in as long as we could. After a visit from Dr. K and morning meds Jackie ate breakfast with Becca and then went to her office to work on speech exercises. The session would be split in half as Becca had yet another surprise for Jackie’s lunch.

Before the surprise, Jackie headed to PT with Erin. They stretched and trialed another chair. Erin wants to make sure that the loaner chair we take home fits Jackie perfectly. The new chair that is ordered will take a while to come in.

If you have been reading my posts you may remember the cheesesteak challenge that Becca and Jackie worked on together. To help Jackie work on his speaking volume, Becca wheeled him around Magee so he could ask staffers and patients their favorite place to get a cheesesteak in Philly. Jackie would get to eat a cheesesteak from the restaurant that got the most votes. Just as the challenge was coming to an end, Jackie started going downhill and never was able to enjoy the fruit of his work. Today would change all of that. Robin in guest relations picked up the steak and brought it to Jackie’s room by noon. He was totally surprised and thoroughly enjoyed the cheesesteak under Becca’s supervision. PTL

After this incredible lunch, Jackie visited with his Grandma and Grandpa. Paula then came to pick him up for OT and the focus was stretching. Jackie’s left arm and leg continue to be tight and takes daily stretching to loosen the muscles.

After a rest in bed Jackie had a late dinner, enjoyed a Magunm bar and then returned back to bed and watched the Flyers. Even after all these months Jackie’s perseverance paid off and he was able to enjoy his Philly cheesesteak from Jim’s. PTL

“There are 2 rules in life:
Number 1- Never quit
Number 2- Never forget rule number 1.”
~Duke Ellington

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Wednesday, November 19

A Long Day Of Therapies

Today Jackie had five therapy sessions. As with most days it started with speech. Becca continues to work with Jackie on what type of food he is eating. Today she upgraded his diet to one step below a regular diet. PTL Art Therapy with Lori was next. Jackie did a little bit of artwork, but the two mostly talked. Lori’s demeanor is calming and Jackie enjoys spending time with her. The end of this session led right into PT with Erin.

After eating a good lunch and resting a little in his chair, Jackie headed to the gym for OT. Paula had scheduled Joey, Magee’s service dog, to work with Jackie for the entire hour. Christina, Joeys handler and human mom works very well with the therapists and the patients. Today Jackie worked on his sitting and standing balance by petting and combing Joey. He even brushed her teeth with poultry flavored toothpaste and threw a ball for her to retrieve. Jackie has always had a dog in his life, so this type of therapy is something that he truly enjoys. It helps keep his mind off the work he is doing and brings a multitude of smiles to his face and everyone watching. It was Jackie’s last session with Joey and saying goodbye was bittersweet.

As we left the gym, a friend of Jackie’s from freshman year who recently started attending a college in Philly stopped by for a quick visit. We had just enough time for a brief chat in the hallway and then went back to the room and got ready for Jackie’s next therapy, car transfers. This was our second time practicing getting Jackie in and out of the front seat of the car. I think it is the hardest of all the transfers, but with tips from Erin we were making smooth transitions by the end of the session. Jackie is also getting stronger and helps as much as he can which makes things easier. PTL. As with the first session, we took a spin around the block. This time Erin wanted Jim to slam on the brakes to see how Jackie would handle a sudden stop. The test went well and we are all confident that he will be safe and travel well in the car versus having to rent a wheelchair accessible van. PTL

Jackie was tired. It had been a long but good day of therapies. He rested in bed prior to dinner. He ate well, then got a shave from his Dad and showered. It was time to refuel for another day. Jackie’s hard work is starting to pay off and all of us are excited about the progress we see each and every day.

“All life demands struggle. Those who have everything given to them become lazy, selfish, and insensitive to the real values of life. The very striving and hard work that we so constantly try to avoid is the major building block in the person we are today.”
~Pope Paul VI

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Tuesday, November 18

Getting Ready

Even though we are going day by day, we keep our homecoming date in mind as we work with the staffers to get ready. The morning unfolded as it usually does with a visit from Dr. K and morning meds. Then it was time for an Activities of Daily Living (ADL) session with Paula. Each time Paula works with Jackie he seems to be able to do a little more. It is still a struggle to dress himself due to the lack of function on his left side but he powers through as hard as he can using Paula’s tricks to make it easier.

Becca was splitting her session between breakfast and lunch. This time she ordered a burger and Jackie finished more than last time, eating about 3/4 of the sandwich. PTL

Erin was not in today, but left instructions to change Jackie’s chair to the new loaner that he will use until the one that has been ordered for him comes in. While the team was working on changing up the chairs in the gym, Jackie jammed to some music with one of the therapy aids by snapping his fingers and shoulder shrugging. Allie was still playing the tunes when she wheeled him back into the room.

Thanks to Florent and Lindsay, the boys started getting caught up on past episodes of the Walking Dead via NetFlix. Jackie got Jim hooked on the show and the two of them were glued to the iPad as they were able to watch one of the past episodes. This lead right up to a short OT session where Paula worked with the three of us on transfers in and out of the shower. For now it will take both Jim and I to help Jackie. This will ensure proper safety until the spasticity in Jackie’s left leg gets better.

It may not sound like a lot, but transfer practice is extremely tiring for Jackie. When we got back to the room we moved him into bed for a rest just in time for a visit from Visa, Jackie’s furry companion that we met at Jefferson Hospital. During the visit Paula brought Jackie’s old chair back to the room as the new chair was not comfortable. Knowing our plan to leave next week, Jane said this would be their last visit. Jackie said he did not want to say goodbye. Jane thought maybe they would make the trek and possibly visit us at home some day.

Dinner was next and a little bit of TV.  Jackie was still tired so we helped him get back in bed. While watching a little more TV the mom and sister of Jackie’s friend from Bloomsburg stopped by with enough goodies to hold us until when we leave. They also stopped and got the boys milkshakes at Chick-fil-A. Even though Jackie was in bed we raised his head high enough that he could enjoy some of the shake before going to sleep. I can’t tell you how wonderful it is to see him able to enjoy something that is such a given for us. PTL

It has and continues to be a long journey for Jackie. His will, determination and desire to walk keep getting him through each day. Eventually all his hard work will pay off. For now he keeps getting up and getting ready for each new day.

“Never, Never, Never give up!”
~Winston Churchill

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