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Root of the Problem

Hello blogging world, Anthony Macchio-Young here. I am going to be responsible for updating my blog from this post on, give my Pops a break. Figured I’d start with the root of the story with the bicycle accident and how I got my TBI (Traumatic Brain Injury).

It all started 6 days after moving to San Mateo to find a Graphic Design job. One of my professors, Jensen Hendriks, had put me in contact with a friend of his who builds apps for iPhones and just moved to San Francisco himself. On the sixth day my bicycle, that I shipped from Florida, had come in the mail the morning of February 1st, 2013, so I thought I’d take the CalTrain up to San Francisco and pedal to the networking party my new connection was having.

Tag  they required I used for my bike on the CalTrain.

Tag they required I used for my bike on the CalTrain.

I left with my bike on the CalTrain in San Mateo at around 6pm. Arrived in San Francisco around 6:45pm and then pedaled myself to one of my true passions in life…craft beer, 21st Amendment brewery and then went to City Beer Store for another craft beer. I pedaled away and realized I was headed in the wrong direction, stopped and asked a couple the way to Russian Hill, they told me and I started pedaling in the right direction. I then turned onto a main road and started going downhill. As I traveled downhill I didn’t notice the trolly track because they were foreign to me. My front bicycle tire then gets caught in the track and I flip over head first (had my helmet on thankfully). I stood up immediately and three bicyclist on the sidewalk saw it all go down and said I needed to go to the emergency room and then stopped a taxi van for me. He put my bike in the back, then asked me where I wanted to go, and I said CalTrain. I waited for around 15 minutes for the CalTrain, got me and my bike on, took a few pictures of my head because I knew something was wrong, but TBIs were so foreign to me I thought it was just a concussion, so I thought staying up throughout the night would do well enough.

Picture taken on the CalTrain to check for any visible wounds.

Picture taken on the CalTrain to check for any visible wounds.

We arrived in San Mateo and I got out, walked my dilapidated bike back to my apartment, then realized I had lost my keys somewhere along the way (thankfully), called a few locksmiths with no luck at 11pm on a Friday night, texted my then girlfriend, who was a flight attendant, that I’d need her to stay up with me that night, then took my jacket off and bunched it up like a pillow, and passed out on the apartment’s community porch (last thing I personally remember). My neighbor, whom I never met, found me and dialed 911. The cops came and thought I was beyond drunk because a bottle of beer that I bought at City Beer Store, 3 Fonteinen Oude Geuze, had broken in my book bag. My neighbor then saw me having seizures because she was very familiar with seeing that with her epileptic brother and recommended that they call an ambulance. The medics were then smart enough to take me to you at Stanford rather than San Francisco General. Dr. Odette Harris, Stanford’s managing TBI neurosurgeon, performed surgery on my Subdural Hematoma on the left side of my brain and I was in ICU for two weeks and one day and then transferred to Kentfield Acute Rehab in Marin County.

Next post will cover my story with recovery in therapy thus far!

Stage 2: Inpatient Rehab

First Step

My trunk failing to support me on my attempt to take my first step.

I started remembering what was happening and going on around me 2 weeks after ICU. While at Kentfield Rehab, in Marin County, California, the Speech Pathologist was working very hard on getting me to move my tongue and get some kind of sound out of me, but had no luck. In Physical Therapy I would mostly stand up in the standing frame and 23 minutes was my record while there. I also tried to take a single step but failed miserably, with my trunk collapsing. For Occupational Therapy I would do a board with different sizes and shaped pegs with my right hand because the left side of my body was completely immobile and still does suffer muscle tone. Meanwhile friends and family ran a fund raising party for me back home, Mt. Pleasant, SC, while my mom was staying in California with me and until I got home. After the fund raiser my dad had accumulated $15,000 (Thank you everyone!) and the first thing he did was buy my mom, a traveling nurse, and me first class Delta tickets to Atlanta because they would be bigger seats than coach and way cheaper than renting a private jet. So they took my trache (surgical opening to restore normal breathing) out on April 19, 2013.  Then on April 21, 2013 we then caught a 5am flight to Atlanta to continue inpatient rehab at Shepherd Center.

 

My first full day of therapy at Shepherd Center I said my first word ’hi’. I then worked on my memory, both long term and short term. Within the first week I was there I did a swallow study to determine how well I was swallowing. I passed my swallow test the first week I was there and was put on a level 1 diet (pureed food) and eventually level 2 (honey thickened liquids and fine foods). Another thing I did in Speech Therapy was practice yelling out ‘ahh’. The typical, healthy, person can yell out ‘ahh’ for 20-25 seconds, but while at Shepherd I could only get mine up to 3.5 seconds tops. In Physical Therapy I was first started on serial casting to get rid of my ballerina feet, then moved on to mat exercises, walking in a platform walker with Bioness (remote estem device), graduated from the hoyer to heavily assisted transfers, and practiced getting into a vehicle for my parents’ sake. Occupational Therapy consisted of arm stretching, getting the first movement out of my left arm, and the FES bike (pedaler for OT and PT that consist of estem).

'Pedaling' my way to the city on the FES arm bike.

‘Pedaling’ my way to the city on the FES arm bike.

While there I got a Baclofen Pump to help reduce tone in my left leg and had surgery in my left ankle/achilles tendon to correct the ballerina feet because the serial casting didn’t help as much as everyone hoped. Graduated 4 months after being at Shepherd and I was then invited to their outpatient facility, Pathways.

Next entry will be about outpatient therapy.

Summer of 2014 is the Summer of Fun, Laughter and Recovery

Stickers, flags and Tattoo's. Everyone loves Anthony's logo

Stickers, flags and Tattoo’s. Everyone loves Anthony’s logo

During the summer of 2013, we were still fighting fevers, spells of vomiting and casts on one arm and one leg. There was an operation to implant a Baclofen pump just outside Anthony’s stomach, and another operation on the tendon in his foot. There was a constant flow of doctors, nurses and physical therapists. We were doing everything we could to travel down the road to recovery, but it seemed like there were roadblocks everywhere we turned. Anthony stayed strong and stayed the course. His strength and positive attitude then and now has helped make the summer of 2014 the summer of recovery.

As the summer of 2014 was approaching, Kim and I could see Anthony had become stronger and more confident. His attitude was good. We knew we were finally on the road to recovery and were ready to travel down that road as far as it would take us. We also knew our journey would be steady – but not fast. As it turned out, this summer has been a great one for Anthony.

AnthonyCloseUpScubaSmall

The summer started with the Jackson Gap, Alabama camp in May, put on by The Shepherd Center in Atlanta. It was three days of campfires, cabins in the woods, bunk beds, fresh air and lakeside breezes. It filled our hearts with joy as Kim and I watched Anthony continue his recovery, smiling and gaining confidence by participating in the many camp activities. Anthony went scuba diving twice, went fishing, shot a gun and did some tubing. We tie-dyed some shirts together – that was kind of fun – and went on a pontoon boat. We found that camp was good for our souls and a wonderful opportunity for Anthony to realize that his limitations are not what he thought they would be.        anthonyWithFishSmaller

Friends, Family and Charleston’s Medical Community

Anthony knows his attitude and the way he approaches his recovery is the most important part of this process. But the various blessings surrounding his recovery are beyond this world. The road we’re on is full of caring, heartfelt people. Everyone is doing their part to help guide the recovery process.

Michael with Anthony and Kat on a trip to Florida summer 2014

Michael with Anthony and Kat on a trip to Florida summer 2014

Anthony’s friend since the third grade, Michael Onorato, is there every day. Kim and I know that Michael has an awesome heart and a caring personality. Even before Anthony was strong enough to come home, we knew we wanted to talk to Michael about being part of his recovery team. Each day, Michael and I discuss the schedule, making sure Anthony gets to Roper Rehabilitation for his physical and occupational therapy. Three days a week, Anthony and Michael go to East Cooper Rehabilitation for speech therapy.
Michael and Anthony are together nearly as much, if not more, then Kim and I are. Without Michael and their friendship, the road to recovery would a little bit harder.

Roper’s Outpatient Rehabilitation Services is Anthony’s home away from home. Enough good things could not be said about the staff and leadership there. The halls are full of hope and kindness, which has contributed to and continues to push Anthony down the road to recovery. Emma Chambers is part of the leadership team at Roper, and her warmth and kindness toward Anthony is so heartwarming. After talking with Cathy Therrell, who is the director of rehabilitation, and its obvious that caring and warm hearts flow down from the top. Tara Murphy, Anthony’s occupational therapist, works with him on the day-to-day activities – dressing, brushing his teeth and various other daily activities that most of us take for granted. Tara always displays the caring concern we’ve come to know and respect as Roper’s core approach to caring for their rehabilitation patients.

Anthony’s physical therapist is front-and-center in the recovery process. Katherine Bennett’s energy

Kahterine from Roper and Meg from The Sheperd Center spends time with Anthony in Charleston.

Kahterine from Roper and Meg from The Sheperd Center spends time with Anthony in Charleston.

andpassion for her patients is just what Anthony needed. Her desire to push and teach him what he needs to know is endless. When Anthony accomplishes specific levels or tasks in the recovery process, Katherine’s enthusiasm for his accomplishments are obvious. When Anthony was in Stanfords Hospital’s ICU and the doctors would make their rounds with the residents, I knew Anthony was giving something back to the medical professionals who were helping him fight for his life.  As they talked among themselves, learning about what to do in real life situations, I felt Anthony was giving back to them. When the residents become doctors, they will remember some of the things they discussed as they surrounded Anthony’s bed. I hope some of the things they learned while helping Anthony will help other patients. The same goes for Katherine. I know Anthony will be helping other patients who come into Katherine’s life. The impact Katherine and the rest of the team at Roper’s Outpatient Rehabilitation has been profound. Our family is so happy they are part of Anthony’s recovery team.

Although Anthony’s recovery starts with his attitude, Kim and I have learned we have to back him up by asking the right questions when we’re talking to the medical professionals involved with his care. The answers to these questions will help guide us as we travel down the winding road of recovery.

Speech is an important aspect of Anthony’s recovery. By asking a lot of questions and staying the steady course, we found a super speech team at East Cooper Medical Centers Out Patient Rehabilitation. They just moved into their new facility next to the East Cooper Medical Center, so everybody there is even more excited than usual. After several visits and telephone conversations, we were able to put together a top-notch speech team. We feel blessed to have Jo Ann Fisher head up Anthony’s speech recovery. When I found out Jo Ann
has had extensive experience with traumatic brain injury patients, I was excited to have her on Anthony’s recovery team. Our experience has been that most Charleston speech therapists do not have a lot of experience with traumatic brain injuries. When Anthony and I got a chance to meet her for the first time, we liked her and we realized that she had the expertise to take Anthony down the road to speech recovery. Kaylen Alford, who is Anthony’s age, also has joined Anthony’s speech recovery team. She’s enthusiastic and has the right mix of passion, knowledge and desire.

Mom and Anthony enjoying a moment

Mom and Anthony enjoying a moment

The summer of 2014 has taken us down the right road in Anthony’s recovery process. Like any well-built road, the builders constructing the road are essential to a solid foundation. Our family feels that Anthony’s outlook is solid thanks to the medical professionals who are contributing to his recovery.

Summertime is camp time…

The Shepard Center offers their patients, family and friends the opportunity to enjoy the great out doors each year www.campascca.org .  Anthony had a full weekend with fishing, scuba diving, kayaking and tubing.  A great time was had by all.
AnthonyAndHisPoolPosseyAnthonyGoodPhotoInWaterSmalleranthonyWithFishSmaller

Home Based Recovery

It’s been a long time since we visited. There’s been a lot going on in our lives, and I wanted to let you know what Anthony has been up to.

Stickers, flags and Tattoo's. Everyone loves Anthony's logo

Stickers, flags and Tattoo’s. Everyone loves Anthony’s logo


As some of you might already know, we’ve been home since Sept. 7. Although we’re home, Anthony’s journey to recovery continues. I have to say our lives are rich with hope, prayer, family, friends and daily activities that strengthen our family and our view of life.

I don’t want to get ahead of myself. I’d like to give you a glimpse of want our day looks like, how hard Anthony is working and the loving and caring people who have surrounded Anthony. Together they are leading Anthony down his road of recovery.
Of course, getting back to Charleston and settling in is important. Thanks to Carolina Services Inc. and Ed Tarr, our house is very wheelchair friendly and comfortable. At first, being back home made us comfortable. However, I quickly began to realize the comfort Anthony, Kim and I felt was not going to be an asset to Anthony’s recovery. It was good to feel a certain amount of tranquility, which was not something any of us had felt in a very long time. This sense of tranquility brought on a sense of peace. But peace is not going to push us down the road of recovery. I thought we needed to feel like we were sitting on the edge of our seat. We needed to be a little anxious, mixed with a desire and drive. After being home for a few weeks, I realized why the Shepherd Center, weeks before Anthony left, talked about returning, about other patients who had left and come back after a few months at home. I believe when you leave the environment of a rehabilitation hospital, it’s easy to feel comfortable – too comfortable. The drive and anxiousness to get better and participate in rehabilitation must be carried home.

After being home for a short time, Kim and I began to focus on being more aggressive and assemble a rehabilitation team.

Next – GETTING BETTER FROM HOME BASE
Anthony’s new home-based team.

Starting A New Chapter in Mount Pleasant with Anthony Coming Hom

It was Saturday, Feb. 2, when Kim and I arrived at Stanford Hospital, where Anthony was in the intensive care unit. He had gotten his bicycle tire caught in a San Francisco trolley track and taken a terrible fall. Although he had his helmet on when he fell, he was now fighting for his life.

Within a few days, I got a call from Gayle. Our family had been turned upside down; I didn’t really know

Anthony's event April 13 was a blessed day. these are the angles who produced the show.

Anthony’s event April 13 was a blessed day. these are the angles who produced the show.

how much, but now I know that Gayle did. I couldn’t really understand what she was saying. I was thinking about doctors, nurses and what to do next. Gayle kept saying you’re going to need this and that. Anthony’s going to need care, we’re going to need a place to stay for a while and it’s going to cost money. I knew for sure that whatever she was saying, it came from the heart, but all I heard was blah, blah, Wells Fargo account, blah, blah, we need to raise money, blah,,blah,,blah.

Well, now it’s Friday, Sept. 6, and I couldn’t be happier that Gayle called me during those terrible times. Now I know more then ever why she called me. I know Gayle was called on so Anthony’s life, Kim’s life and my life would be a little and in some

The flooring throughout the home will allow Anthony easy access to his living space

The flooring throughout the home will allow Anthony easy access to his living space

cases a lot easier. Through Anthony’s fundraiser event, spearheaded by Gayle Price, the efforts of Jody Gouge, Carolina Services Inc., owned by Ed Tarr, and the overseeing of construction by David Wright, my family’s life is easier. God is good and, as far as I’m concerned, his work is seen through the efforts of the people I mentioned above and all the many, many other people who have “passed it forward” through their efforts to help Anthony.

Anthony, Kim and I leave Shepherd tomorrow – Saturday Sept. 7, when we get into a van from Mobility Supercenter that is equipped with an expensive Bruno set, which comes out of one of the side doors and lowers itself to the level of a wheelchair so that it’s easier to get Anthony into the van. Mobility Supercenter wanted exposure in Mount Pleasant Magazine, and I wanted the van for Anthony, so we were able to secure a van that will help carry Anthony around. To get the van, we needed additional money, which we received at Anthony’s fundraiser.

I’ve driven from Charleston to Atlanta and back so many times that I’m sure I could drive it in my sleep.HomeDecoratedLivingroom2 After driving 5.5 hours tomorrow, we will arrive to what I’ve been calling the “Mount Pleasants Pass It Forward Home.” Why? That’s the only way to describe the house Kim and I call home and where Anthony will continue his recovery. Over the past 30 days, under the guidance of Ed Tarr of Carolina Services Inc., headed by David Wright, and Jody Gouge have taken our humble abode and changed it into a show house showcase. And on top of that, its wheelchair friendly and the special bathroom Carolina Services built for Anthony will clearly make our family’s life easier.

 Saying goodbye: Getting ready to leave today was joyful, sad and inspiring all rolled up in one. We wanted to make sure to say goodbye to the health care professionals in Ward Two at the Shepherd Center. For the past two months, we’ve been at Pathway, and we haven’t seen any of Anthony’s friends – the nurses and rehabilitation staff. These were the first staff members who were there when Anthony and Kim arrived from California April 21. At first, they were preforming their jobs, taking care of Anthony and working on his speech, eating and physical therapy and checking his vitals. We all became fast friends. They are all great people, and we consider them our Shepherd Center friends. They truly care about our family, so much so that before we left them to go to Pathways, they threw a party, emphasizing Anthony’s progress (See their photo).

Anthony's Graduation from the Shepherd Center.The will always be in our heats

Anthony’s Graduation from the Shepherd Center.The will always be in our heats

They all got a kick out of the stickers used at Anthony’s fundraiser event and

Stickers, flags and Tattoo's. Everyone loves Anthony's logo

Stickers, flags and Tattoo’s. Everyone loves Anthony’s logo

the resulting tattoo I got to pay tribute to my youngest son. The day we left for Pathways, not only did the staff give Anthony a party to remember, but we purchased some modest gifts for the health care team who had inspired, cared for and nurtured Anthony further down the road to recovery. It gave us the opportunity to show Anthony’s family’s appreciation. We gave them plants. We told them as they watch their plants grow, Anthony is taking what he learned at StickerOnBridgeShepherd to continue to grow.

As I travel in our van on Interstate 20 to Columbia and Interstate 26 to Charleston, I know I will feel blessed because the fundraiser helped us get the van and the airline tickets to get Anthony and Kim to Atlanta and from California.  When Kim and I push Anthony’s wheelchair into our newly renovated home, we will feel blessed that Carolina Services, Inc., Ed Tarr, Jody Gouge and David Wright gave of their hearts and pocketbooks and decided to pass it forward through the floors, bathrooms and walls and through the Grace of God.

HomeDecoratedLivingRoomHomeDecorated

 

 

 

 

 

Thank you, Dear Father, for using your grace to make my family’s life a little easier.

A Bicoastal Journey, Angels Wings And A Bittersweet Graduation

As many of you know, our family’s journey started in San Francisco. Throughout our journey, Kim and I have had meetings with more doctors than we care to count, met many nurses, some better then others AnthonyICONJepgbut all very compassionate. We’ve work with case managers from the West Coast to the East Coast who have guided us through the medical maze and insurance paperwork.

We’ve met many knowledgeable and caring professionals along the way, but nothing touches the heights of the angels we’ve met up close and personal. They, too, have been bicoastal, starting with the doctors and nurses at Stanford Hospital, who used the knowledge God provided them to save our son. Then there were Christine and Steve of the Peninsula Bible Church in Palo Alto. We visited their church shortly after Anthony’s accident. It seemed that every hymn we sang was about Anthony’s recovery.  Kentfield Rehabilitation and Specialty Hospital sign outsideAt Kentfield Rehabilitation and Specialty Hospital, we met more angels who worked tirelessly to help Anthony gain strength so we could bring him to the East Coast. No matter which coast Kim and I have been residing on during this journey, there have been even more angels back in Charleston who have been looking after our well-being and praying for Anthony’s recovery. All along the way, Anthony has had his own personnel angel – Elle, his girlfriend since he was 17. She always puts a smile on his face, no matter what kind of mood he’s in. She visits him as often as she can, and she cares for him every second of every day. She is awesome.

East Coast angels rock! More specifically, Shepherd Center angels rock! When Anthony arrived April 22, we did not know they even existed. What makes this place exceptional are the people inside the building, how the medical professionals work together as one unit is awesome and, in my mind, one of the reasons the people at The Shepherd Center are so successful at what they do.

Anthony met his Shepherd angels within hours of his being admitted. At the time, we did not know how special they were. Anthony has spent a total of 74 days at The Shepherd Center and has shown tremendous progress. He has been released from Shepherd and will start a second phase of rehabilitation at Shepherd Pathways (http://www.shepherdpathways.org/) July 10.

Anthony'sGraduationLowResIt’s hard to describe Friday; it was truly bittersweet. We had a family meeting that included Anthony’s team. We call them Anthony’s angels from heaven. Earlier in the day, Kim and I bought some plants for each of the angels. We asked them to think of Anthony as they watched their plants grow.

Earlier in the day, Anthony’s angels had a graduation for him. Pictured here are the all the angels in the neurological ward at Shepherd during Anthony’s graduation. They were showing off Anthony’s stickers, a likeness of him, on their left arm. Everyone was sorry to see Anthony go. Individually, many of the nurses and physical therapists stopped by Anthony’s room before they left on Friday to say goodbye and to tell him how much they were going to miss him.

It was a day full of smiles, laughter, tears and joy, A day that Anthony’s angels could spread their wings of comfort and safety that they had wrapped around Anthony in since April 22 and release him so he could continue his journey of recovery. The Macchio-Young family will never forget the love and positive energy we received from everyone we encountered at The Shepherd Center.

Bubbles,Kites and Walks In The Park

Saturday, June 8 ( last Saturday’s activities Posted today June 16* ) We hope you’ll find this a fun read,

Saturday morning, about 8:30 a.m., Michael and I went over to the Shepherd Center, while Kim took one of those rare mornings to work. She works in the evening or during the day when Anthony is sleeping. Between helping with Anthony’s care and working at MUSC, she’s putting in 12- to 15-hour days.

Michael and I entered Anthony’s room, and, of course, we’re approaching the AM as a guys’ morning. We were just starting to have a little fun when weekend occupational therapist came in about 10 a.m., so we went right over to the gym. He has only one session on Saturday. Anthony sat up as tall as he could. I helped him stretch out his back as he sat on a raised mat. Working together, Anthony and I learned how to pivot from his wheelchair to his bed or gym mates.

When we were done Anthony, Michael and I went back to Anthony’s room. We wanted to have some fun, and Anthony was up for it. The day before, we had discussed some of the things we could do. That night I bought a Buzz Light Year kite. I’ve told Anthony I love him like Buzz Light Year said in “Toy Story,” as Buzz said as I have told Anthony many a time “Infinity And Beyond I how much I love you” so the kite had special meaning to me – plus Anthony really likes “Toy Story.” With Kim’s encouragement, I bought some awesome bubble makers. I mean they can make some huge bubbles. I pictured Anthony reaching for the sky trying to burst the colorful bubbles as they glided through bright blue sky.

AnthonyFlyingKiteNow the questions is: Where to do have our fun? We have a “push pass,” so where should we go? I thought the top level of the parking lot would be sunny and empty. After Kim arrived, it didn’t take us long to take off down the halls of the Shepherd Center and up the elevator to the open parking lot. It was great – open, somewhat private and easy for us to roll Anthony around. We got Buzz up in the air a couple of times. Anthony held the line, Michael held Buzz and I rolled Anthony up and down the parking lot as Kim shouted: “Watch it Bill. Don’t go to fast. Please be careful.” You can see Anthony holding on to the kite in this picture. Those of you who know Kim and I you can use your imagination concerning what she might be saying to me.

As the wind died down, Buzz sort of lost interest in taking another flight. But what was really cool was that one parking lot away was Piedmont Hospitals helicopter landing pad. While we were there, we got to see a helicopter land and take off. Here’s a picture of Kim andKimWatchingHelicopter Anthony watching a takeoff.  See picture on right.

The day before, Michael found a park that was really close to the hospital. Although I tend to be adventurous, I realized that this was our first real outing with Anthony in a wheelchair. The park was awesome. I found that we could take Anthony through Piedmont Hospital’s hallways, parking lots and elevators. We would be in a controlled environment before we hit the streets and sidewalks of Atlanta.

At about 3 p.m., I asked Anthony if he was ready for another adventure. He raised his thumb high in the air and his eyes lit up. That’s all we needed. Michael, Kim and I were ready. I helped Anthony into his wheelchair, and once again the four of us headed down the halls of Shepherd to the tunnel that connects to Piedmont Hospital. We found our way to Collier Street, which took us to the Atlanta BeltLine and Ardmore Park.  Of course, we had a few challenges. Kim had her ideas on the best way to get Anthony there. I have to say some of the roadways can be somewhat challenging. But with teamwork among Michael, Kim and myself, we safely navigated Anthony down some pretty steep roadways and hills to the BeltLine and Ardmore Park.

Kim, Anthony and Michael enjoy a day in the Buckhead's newest park

Kim, Anthony and Michael enjoy a day in  Buckhead’s newest park

As you can see by the photos, we were having a good time. It was a great way to end an adventurous day full of bubbles, kites and a walk in Atlanta’s newest Buckhead park. We hope other Shepherd patients will be led by a little adventure in their soul and discover the BeltLine.

Later I talked with Anthony. I told him there are all sorts of ways to leverage what we have to make sure we have fun.

*this past week has had some rough times for Anthony. He keeps throwing up.  Friday he had a x-ray scheduled to see how his digestive system is working. He is scheduled for another x-ray Monday. We hope to get a reading on the Friday and Monday x-rays sometime Monday.  We hope and pray next week will be better.  Friday, June 21 and Saturday June 22, Kim, Anthony and I will be living together in Shepherd apartments designed to help families learn to live together under special circumstances.  We’re a little nervous but we’re looking forward to being together.  Your continued prayers combined with your constant river of hope provide us with additional strength.  Thank you.    

 

THERAPY,TEAM WORK AND HARD WORK SPELLS HOPE

AnthonyWavingLayingDownAnthony is progressing well. As many of you may know, last week, Anthony had an operation to implant a Baclofen pump. The doctors are pleased with the progress of the  pump, which is designed to help stabilize his trunk and legs. Once they are stabilized, rehabilitation will be able to strengthen his trunks and legs. They’ve already begun this process. Anthony’s left side is very weak, but nothing at this point says it won’t get better, so we   are praying a lot about that. His speech is getting stronger with each day. Although he is   not speaking sentences, his words are getting stronger.  I think one of the greatest blessings is that Anthony’s mind and personality are intact. As parents, Kim and I have heard and seen so much at the different hospitals. Our firsthand  experience makes us even more aware of how great our blessings are.  The doctors are working on variations of his various medicines. Anthony is struggling to sleep throughout the night.

Friday June 7, 2013   Michael Onorato, one of Anthony’s friends, and I left Charleston about 5 p.m. on Friday.   Five hours later, upon arriving in Atlanta, we visited Anthony. I always go to Anthony’s  room before going to our temporary Atlanta home.  He’s always sleeping when I look in,   but it gives me some peace of mind to see him lying there with his eyes closed, healing as he’s sleeping.

Michael was going to visit his friend later in the morning. Kim and I were going to the  hospital early Friday to help give Anthony a shower. I’ll never forget walking into his bathroom, not long after arriving at Shepherd, when he got his first shower since the accident. I could see the joy in his eyes. Taking a shower is part of his physical therapy.   Getting out of bed; holding the washcloth; soaping; rinsing off. All of these motions and movements that go into taking a shower are rehabilitation.  

KimCuttingOffRedCast Before taking Anthony to his shower, Kimberly, pictured here, a member of Anthony’s physical therapy team, cut off this latest cast. Kimberly not only can put a cast on but,   as you can see, she can cut one off. This is the second one she’s put on his right arm.   Kimberly has cast four on his left arm. The casts help straighten his limbs. They are   reset at different angles each time so they extend his muscles further out so they will   not contract. This will help Anthony with rehabilitation, and rehabilitation is what the Shepherd Center is all about. Watching the doctors, nurses, physical therapists and case mangers work in tandem is a KimCuttingOffAnthonysCastmiracle in itself. This kind of teamwork is why HOPE walks the hallways of the Shepherd Center.   After Anthony took his shower and started to get ready for his Friday occupational   therapy activities, I texted Michael, and he hurried over. This was the first time Michael   has seen his friend since the accident. When Michael entered the room, Anthony’s   pleasure to see his friend since third grade was obvious.   Working with the patient is the what it’s all about at Shepherd. Shortly after Michael joined Kim and I, Anthony was in the second floor rehabilitation gym doing leg lifts. As   you can see, Anthony is working hard. I don’t care what kind of shape you’re in; this is a   hard exercise.   Friday’s been a good day for a lot of reasons. Of course, for me it was being with my son and wife, but there were many other things that added to the joy of the day. When   I walked out of Anthony’s room I ran into Sam, the nurse who works for Critical Care   Transport. Sam and his company worked with me to find the most secure way to   SambyAnthonysBedtransport Anthony and Kim from California to Atlanta. He brought them to Atlanta on   April 22. He was such a blessing with his positive, can-do attitude. He was great, as were   Critical Care Transport and Tara, our Shepherd case manager. When Sam stopped by, pictured here, he couldn’t stop telling Anthony how great he looked and how well he was doing.   One of the reasons Friday was a good day is that we got a “push pass” for the weekend.   Watch out Atlanta – that means we can push Anthony around the city.

Sam assists in flying Anthony and Kim To Atlanta April 22. Read Here Click Here!

 

Anthony Is Doing Better Than He Was Last Week

Anthony Is Doing Better Than He Was Last Week

May 27, 2013

I was at the Shepherd Center in Atlanta May 17 through May 21. That Monday, the 20th, Anthony was really fed up. Early that morning he had a good cry. No one else was around, just he and I.

He was in his wheelchair I was sitting on his bed, and he just started sobbing. He spelled “this sucks” on his alphabet board as he was crying. I told him we had to move forward, be strong and work incredibly hard. I wanted to cry along with him. If he wasn’t crying so hard, I’m sure he would have seen water in my eyes.

I think one of the things that brought this on was that Anthony wasn’t feeling well; he had been throwing up for the past five days.  After we had our tearful

Anthony has been throwing  up man days in a row. We had several convesations with doctors and nursers. Early-on Kim and I were consider. He had a CT scan on Saturday.

Anthony has been throwing up several days in a row. We had several conversations with doctors and nurses. Early-on Kim and I were concerned. He had a CT scan on Saturday.

conversation, I told him it was OK to cry but not to let it define him. You have to wipe the tears away and stand strong.

When Anthony leaves the Shepherd Center, Kim and I want him to be as strong as possible.  Anthony is having challenges with what is called spastic hypertonia – or muscle contractions –on his left side. His leg, arm and hand are keeping him from taking full advantage of the rehabilitation offered at the Shepherd Center.

Anthony’s doctor suggested that he have an operation tomorrow, Tuesday May 28th,  to install a Baclofen pump. Although there are side effects, there is a lot of upside, including a significant reduction in spasticity and spasms. We hope you’ll  pray and send good thoughts regarding Anthony’s operation.  Here’s a LINK to information regarding Boclofen pumps.

The Secret Garden At Shepherd really isn't a secret but it is nice. It boarders Peachtree St.

The Secret Garden At Shepherd really isn’t really a secret but it is nice. It boarders Peachtree St.

This photo, taken Sunday, is of Karen Reece and Kim with Anthony in the Secret Garden at the Shepherd Center. It was a great day and Anthony was feeling good. Temperatures got up to 84, and there was a gentle breeze.

Karen and I arrived Friday night at about 10:15. I went to the Shepherd Center on the way to the hotel Kim and I have as our Buckhead home. Of course Kim is there a lot more them I am. After a night’s sleep, Kim, Karen and I headed to Anthony’s room at 8:15 the next morning. After feeding Anthony breakfast and spending the morning in his room, Kim and Karen went off to do some grocery store shopping for our Buckhead home and to grab a light lunch.

rGetting ready to shave Anthony with a very sharp razor.

Getting ready to shave Anthony with a very sharp razor.                 

Anthony and I had a great time. This is a photo of me just before I shaved him. The other photos are of us having fun. Anthony and I decided to have a party while the girls were away. After he got a shave, we played checkers and watched a movie.

Anthony and Dad havin fun at the Shepherd Center.

Anthony and Dad havin fun at the Shepherd Center.

 

 

Today, May 27, Anthony had speech and occupational therapy. He’s been in a really good mood all weekend and worked hard during his therapy sessions.

Karen and I left Atlanta about 12:30 p.m. and arrived in Charleston at 5:30 p.m. During the trip, I asked Karen what she thought. She told me “she loved seeing Anthony laugh and smile” and how “It was good to seeing Kim.” Karen said she thought Kim looked good and was doing well.

I know how my days go, and I’m sure Kim’s are similar. If Anthony is doing well, I’m doing well.

TIRED BUT STILL WORKING HARD WITH THREE CASTS ON HIS BODY

Kim and I know we’ve been blessed in so many ways since we began this journey with Anthony, which started in Palo Alto, California, Feb. 2. It started with a telephone call at 4:02 am and a very long plane ride. When we finally arrived at Stanford Hospital’s ICU and found Anthony surrounded by all those lifesaving machines beeping and flashing 97 days ago from this date, Sunday, May 12, 2013. It seems like an eternity ago.

We’ve attended many teacher conferences , graduations and, of course, 23 birthday parties. Always taking in information and creating memories that will help guide Anthony, hopefully,  to the right paths and decisions in his journey through life.  At first, as you may expect, we were not ready for want we found in the ICU. It’s hard to understand how to guide your child when everyone around you is so grim, when the nurses and doctors are talking about how to keep Anthony alive.

But check out this photo! Several times a week, Anthony spends time on his stomach. They are doing whatever they can to strengthen his core and other parts of his body. The casts on his feet are pushing the balls of his feet up to his knees. This will increase the range in his tendons, which have tightened up and shortened, which makes it hard to put pressure on his feet and walk. Listen to this.  So here’s

Several time a week PT places Anthony on his stomach to help strength his core. He is doing his physical therapy with three cast on his body. There is one word for this INSPIRING !

Several time a week PT places Anthony on his stomach to help strength his core. He is doing his physical therapy with three cast on his body. There is one word for this INSPIRING !

Anthony, a cast on each leg for the past two weeks. His PT team wanted to put a cast on his left arm to for the same reason he had the casts on his legs. Before they put the left hand and arm in a cast, they asked Anthony if he wanted to wait until the leg casts were off. He chose to have three casts on his body.  This picture and Anthony’s attitude demonstrate how God’s healing is working, how the many, many prayers that are being sent out from across the country are giving Anthony the strength and right mentality he needs to get through this.

This is a picture of a survivor and fighter; a person who has an awesome attitude; a person with a will to live and to work hard to get what he wants. While he was growing up many times I told Anthony that our strength is built through adversity and struggles. Not necessarily when everyone is smiling and times are good. Anthony will have the strength of Hercules when he reaches the end of this journey.

By looking at this picture, I continue to see how Anthony is touches people in very positive ways, just as he has done over the past 23 years. Kim and I have had so many people, young and old and in all walks of

Several time a week PT places Anthony on his stomach to help strength his core. He is doing his physical therapy with three cast on his body. There is one word for this INSPIRING !

Several time a week PT places Anthony on his stomach to help strength his core. He is doing his physical therapy with three cast on his body. There is one word for this INSPIRING!a deeper understanding about this part of his journey. I don’t want to say that Anthony didn’t his challenges times as he was growing up but that’s for another story.

life, tell us how Anthony has touched their lives. It has been truly amazing. I know I’m his parent, and of course I will say positive things about any of our children.  I don’t want to say that Anthony didn’t his challenging times as he was growing up but that’s for another story. If you could be on this end of the receiving line, you would have a deeper understanding of what i’m trying to say.

Even when Anthony was lying in the ICU he was giving back. When the young residents and doctors would surround his bed, they would talk about the severity of his brain trauma and what they needed to do to keep him alive. It was a very grave situation, many of them would tell us. When you look at these future doctors and see the expression on their faces as they look down at Anthony as he lies there motionless and unconscious, you can’t help but think they are learning something that will help someone else survive their own sickness or brain trauma after they become doctors.

What they can’t see is Anthony’s tremendous will and determination to do the best he can when dealing with any situation life dishes out to him. Kim and I can hardly wait to see the strength Anthony will display Aug. 17, 2013, which is 97 days from today.

When I write a post it’s really hard not to thank everyone who have been their for Anthony.  I’m sorry if anyone gets tired of me saying that but know it comes from Kim’s and my heart.