Tuesday, March 10, 2015

Remembering A Most Special Day

While riding home from rehab in the back seat, boys in the front, I decided to read some of the very early blog posts. They flooded my brain with memories and eyes with tears. Jackie has come so far and he has worked so hard to get here.

I remember one of the old veteran docs on the trauma team at Geisinger telling us that based on his experience the best chance of recovery occurs if patients wake up from their comas within 14 days of their injury. It was March 10, 2014 – day 15. Jackie was still asleep. The night before, his college held a prayer vigil where many students stopped to pray and sign two massive banners that ultimately hung in Jackie’s room all 6 months while we were at Magee. Jackie was in the Long Term Acute Care facility and Lenora his first speech therapist stopped by. She started talking to him and he actually squeezed her hand on command. Then the most beautiful, most miraculous thing happened, he slightly opened both of his eyes. I can’t explain it other than to tell you it was truly a gift from God. Jackie was back.

A year has passed from this reawakening and we think back and celebrate this most special day. There were so many uphill battles that would have to be faced, but at least Jackie had a chance to fight them.

He continues to attend Physical, Occupational and Speech therapy sessions four days a week in Hershey. The gym is on the smaller side which allows everyone to get to know each other. The staff is great and they genuinely care about each and every patient. Jackie is making good progress. Thanks to his PT and a walking brace, his left leg is advancing forward on its own. PTL He still needs assistance to walk, but is getting a little better each week. He still needs to think about many things in order to try to stay balanced and walk just a couple steps. We are reminded every day how many things all of us take for granted. Jackie is also working hard with OT to start using his left arm and hand. We had his arm brace adjusted and push him at home to try to use his left hand to hold items. Letting go of the item is still a chore. We are being patient and are not going to give up until Jackie can type or text with both hands. He is making great strides in Speech. He is participating much more in conversations and initiates many of them himself. PTL He is even speaking louder. Becca from Magee would be so proud!

Aquatherapy is one of Jackie’s favorite therapies. Next week he will start getting in the pool two times per week. We were able to meet Dr. Hetrick who invented the HydroWorx pools and he told Jackie to keep giving 120%. He had a brain injury as a child and knows first hand how tough it can be to get back on your feet.

Next month Jackie will be starting music therapy. We are hoping that it will help in its own way to reconnect pathways in Jackie’s brain and pave the way for new connections.

March is Brain Injury Awareness month. According to the Brain Injury Association of America, 2.5 million children and adults sustain TBIs annually. At least 5.3 million live with a TBI related disability. Please continue to practice patience and positivity with your friends and loved ones who may be one of the millions living with a TBI. Thanks to all for your prayers and for sharing your love and hope with us.

“Happiness comes only when we push our brains and hearts to the farthest reaches of which we are capable.”

~Leo Rosten

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Monday, February 23, 2015

One Year

It was a Saturday night, February 22, 2014, we were with friends at a Hershey Bears hockey game, thankful for all the blessings in our life. After all we had two awesome kids, one a college graduate paving her way on her own and making us proud with every step and another also making us proud by enjoying and embracing his independence at college, stepping up to responsibilities and loving it. Life was good!

We had started a room project at home that day and were planning to finish it the next day, February 23. The upstairs of the house was quite a mess, but it was only going to be that way overnight, or so we thought. We were asleep for a couple hours when it happened. The incoming call that would change our life forever and create ripple effects throughout many others. Jackie had been injured and was being sent to a hospital near his college. As would any parent, we immediately got into the car and headed to Danville, PA. At this point we did not know the extent of Jackie’s injuries, but knew it had to be more than a minor injury since he was not being sent to the local hospital. Later we would learn that he was life flighted a mere 9 miles from the local hospital to this level 1 trauma facility. About half way there we were finally able to talk with the trauma team. The doc on the other end of the line did not give us a recap of Jackie’s condition instead said, “How far away are you?” I can’t explain exactly how we felt but I remember being sick to my stomach, in disbelief and I’m sure in some form of shock.

Jim was driving safe but fast. If pulled over, we knew the police officer would understand. What seemed like an eternity to get there was actually a little less than two hours. We ran into the ER entrance and were greeted by a couple of Jackie’s friends and a social worker; another red flag that things were not good. She took us through the hospital up to the Intensive care unit. We rounded the final corner and there, surrounded by at least 8 or more medical professionals was our boy. He had a bolt in his head to gauge internal pressure and was on a ventilator with too many tubes to count. How could this happen? It was time to wake up from this really bad dream. As the early hours of the morning continued, Jackie survived his first of many surgeries and his marathon to recovery commenced.

Fast forward one year and thanks to many prayers, caregivers, and an outpouring of love and support, Jackie is making positive strides each day. As we live and focus on each of these days we realize we have been blessed to spend so much time with Jackie. Time slips by so quickly but we have been able to capture a slice of his life and we are enjoying every second. As he heals we are reminded even more how kind he is, how funny he is and we have fallen in love with his new laugh. He gets up every morning and even though he still cannot dress himself completely or walk independently, charges forward and gives each day everything he has.

Aqua therapy is going very well. Jackie loves going once a week and walked with the help of two therapists on the treadmill in the pool going the distance of about two football fields. His balance, trunk control and left side continue to be a challenge, but are not dampening his will to walk on his own. He is exhausted after his half hour session, as he is when he gets home from his four day a week sessions at Hershey Day Rehab. He is very aware when he needs to rest and continues to just want to get back to normal. We purchased a padded chair for the kitchen table and now help him transfer to this chair instead of eating in his wheelchair. He loves his Hurrycane and cannot wait to beat Grandpa in a foot race.

We can feel in the depths of our hearts that prayers, positive thoughts and patience will lead Jackie back to independent living. Until then we will continue to do everything possible to make his next 365 days better, one step at a time.

“When you get into a tight place, and everything goes against you till it seems as if you couldn’t hold on a minute longer, never give up then, for that’s just the place and time that the tide’ll turn.”

-Harriet Beecher Stowe

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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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