"Strength does not come from physical capacity. It comes from an indomitable will." ~Mahatma Gandhi

Friday, June 29, 2012

Guestbook Archive Now Available for Viewing!

After many hours of copying pasting, and general cleanup, Sonny's old guestbook is archived here for easy viewing! Sonny's friends and family began his Caringbridge site on September 8, 2008, four days following his accident. The outpouring of notes and encouraging thoughts over the months and years since then have been a blessing, and we wanted to be certain that not a single correspondence would be lost. Those entries can be viewed by clicking the Guestbook Archive tab above.

It was enlightening as I browsed several of the entries while compiling them, to see the progress different people noted in Sonny over time...he has come so far. Thanks once again to everyone who has written and those who continue to drop by his little corner of the web to let him know you think of him. It means more than you might think, and we are grateful!


Sunday, June 17, 2012

Whew! As of today, Sonny's entire journal archive from the time of his injury to the present day is now available here! They are stored according to year, so you can browse through the progress he has made during certain time periods. This should make it easy for folks to navigate through the very large number of previous entries. Current entries will be posted right here on the main page of the blog, so we invite you to return often and/or subscribe to receive notification of new posts new posts in your email. Thanks for reading!




June 4, 2012 12:12pm

"Rome wasn't built in a day..."

Hello again,

One more brief note today. You may have noticed that the theme of Sonny's Caringbridge page has changed from the Classic Car motif to a skyline view of ancient Rome, and his new website and blog here follow a similar theme. There is a reason for this.

Sonny was injured nearly four years ago...it has been a long journey for him to this point, but his sojourn is far from over. He has struggled, cried (we saw it!!), laughed, wrestled, and triumphed over so many obstacles. Yet, his climb toward his personal summit continues. "Rome wasn't built in a day", as he saying goes...and Sonny's recovery happens slowly, sometimes with fits and starts, but it continues relentlessly forward nonetheless.

So,at his point I decided to change the artwork and invite you all to walk with us on Sonny's road. It is sometimes not a pleasant one, but always a beautiful one. There are many who say that Rome was amazing...others say it fell short of what it could have been. But the point is, Rome became what Rome was ABLE to become...built wih the sweat and determination of a people committed to forward progress.

WE are committed to forward progress. Some will say that Sonny "was amazing in his recovery", others will say "he could have been so much more". But as with Rome, Sonny will become all that he is able to...and it will take the sweat and determination of not only himself but also many others to see him get there.

Rome wasn't built in a day...Sonny won't be, either. But we will continue the work, stone upon stone.

Every blessing...
Lorrie

June 4, 2012 11:45am

MANY CHANGES!!!

Hello everyone,

First, apologies for there having been no recent updates to this journal. This spring season has held many challenges for our family, and we simply have not had the time or energy to be as vigilant as we like to be about keeping this up to date. Things seem to be settling down a bit now, so hopefully we will be able to stay better connected and keep you all better informed about Sonny's progress.

The most notable change is that Sonny has moved to a different location, due to North Creek closing as of May 1st. He is now at Health and Rehabilitation of North Seattle in the Greenwood area. Mailing address will be at the close of this journal post.

There have been many challenges for Sonny as he has had to adjust to new surroundings, new staff, and new schedules, but he has come through like the true soldier that he is! He has had a few setbacks, mainly because the staff do not realize all that he is capable of doing for himself, but we are working on "training the new help" and they seem receptive to becoming acquainted wih him so that his progress can coninue. For example, they have thought that we was unable to feed himself at all, so have been feeding him entirely without allowing him to pick up foods and feed himself...so he sort of became accustomed to that and stopped trying. But with a little diligence and a few stern conversations from Mom and Sis, he has rallied and is back on the road! (See the photo taken today of him eating salad BY HIMSELF!)

We hope that you all will continue to check in and visit/write when you can, and remember that we also read to him all of the guestbook posts and emails that come for him. Because he is in North Seattle now, we are hoping that it might be easier for some folks to stop in now and then. Of course, I am always willing to meet anyone who wants to come, to walk you in he door and help you to be more comfortable with a first visit. Nursing homes can be intimidating, especially if you are unfamiliar with the facility, but honestly it is simply "Sonny's new home" and his friends and family are ALWAYS welcome guests. I can also arrange phone calls for him, as whenever Mom and/or I are going to be there we can make a call and give Sonny the phone so he can listen to you! He is still primarily non-verbal, but the smile on his face when he hears the voice of a friend or loved one is absolutely amazing!

Sonny's new address is:
13333 Greenwood Avenue North, Seattle, WA 98133 Room 140
Lorrie can be reached at 206.330.3269

We appreciate all of your friendship as we approach he fourth year of Sonny's recovery...we look AHEAD for him, not behind...we hope you all will continue to do the same.

One final note: The term "Vegatative state" has been tossed around a bit concerning Sonny, and we have only this to say...People in a vegetative state do not feed themselves, cry, laugh, or kiss you back when you say "I love you"...Sonny does all these things and MORE. 


'Nuf said.

Blessings to all of you!
Lorrie...the fortunate little sister to my courageous big brother, aka Superman!

February 7, 2012 8:48am

Just a quick note ~ we had Sonny home on Sunday for the super bowl.  Lorrie and Dan were there and Sam.  We had a nice, easy day after Dan and Lorrie changed my tire that went flat as I pulled into the nursing home!  Sonny seemed to have a nice time ~ ate a lot and smiled a lot.  We told him that next year he has to cheer out loud.

I brought the ipad home and downloaded some more games.  I've tried to learn to play them so I can show him but I have found that I am really awful at video games!!  Some turned out to be more complicated than I can deal with so I know they are too complicated for him.   I'm leaving them on the ipad though with high hopes that they will be doable down the line.  One of these is Lord of the Rings.  Sonny loved that book so I thought the game would  be nice.  But I can't even remember all the rules.!!  And I haven't managed to get past level one of Angry Birds.

Take care all and have a great week.
Loretta




February 2, 2012 12:52pm

Hi again,

Well the Prologue2go progam is really awesome!  I have set some things up on the home page and we will add to and move to other screens as Sonny is able to navigate.  The speech therapist can also use it and set things up.  Take a look if you go to see him ~~ you can use the ipad to take a picture of yourself.  Then use the hi button and the keyboard to say hi, your name, and whatever else you would like him to say.  Attach the picture to the message and when you go in Sonny can pick out your picture and tell you hi.  Really cool.
I think we kind of overloaded Sonny last week with the ipad and teaching him again to use a fork and spoon.  He actually had a few tantrums, slammed the arm of his chair and said "NO".  So that is good too. He has refused things by ignoring them but has not been verbal before.  His doctor told me yesterday how amazed she is with his latest progress.  He is interacting with her also and recognition is showing short term memory which is really good.

And the Ipad is there and you can play games with him on it.  He seems to enjoy someone else playing and showing him how.  If you know Sonny you know that he doesn't like to do things he isn't sure of.  So he is moving slowly into these programs. Just if the battery gets low please plug it into the charger.

Take care everyone
Loretta















January 21, 2012 4:07pm

Lorrie has been keeping Sonny's Facebook updated but I have been remiss at keeping this site up.  I'm not ready to just let it go because I know some people keep updated on this site that don't have Facebook.  Sonny is doing well, actually made more progress.  He is following the same pattern ~ he makes some progress and then he stays put for a while.  I got him the IPad for Christmas and I've downloaded some simple games and books.  We can put all of his music on there too so he will have only one item to deal with.  He has been learning how to navigate ~ to a point and when he wants to.  I left him last night with the book Huckleberry Finn and he was really concentrating.  He was always a voracious reader and I keep hoping that this will push him to trying hard to master the IPad.  We are going to bring it home this weekend (no WiFi at North Creek) and download a program called Proloque2go.  It's a picture to speech program that they are using for autistic kids who are non-verbal.  It would really help communication which is a big issue.  We had looked at the Dynavox system but it is over $40,000.00 so not affordable.  This program is so I'm excited about that.

If anyone visits please leave him with the TV turned on or the IPad set up.  There is a tray there that slides into his wheelchair from the front.  He has to be sitting up for it to fit right.  Or fold a pillow on his lap and prop it up.  Too often he is left in his room staring at the walls and ceiling.  Also be sure to sign in so we know who has been there.  Then we can talk about it with him.

And if you cannot make it to visit please send cards or notes.  He still has a sense of humor and really enjoys the cards.  It takes some doing sometimes to realize that he really is in there.  We just have to go slower and do only one thing at a time. Sonny definitely cannot multi-task.  Probably because it takes so much concentration for him to understand.  We have taken him to a couple of concerts and he was home both Christmas and New Years.  Some of you have been here when he was home in the summer.  Lorrie and Sam have taken him for walks around the nursing home as long as the weather is decent.  He has a coat and hat there and loves to be outside.  We just have to watch the sun even in winter as he burns easily.
So there you have it.  Progress has been slow but is still there.  And we continue to push gently.  He has some really good CNA's and nurses and of course some not so good.  So I pitch a fit when necessary.  If any of you go to see him and he is not clean or shaved please let me know.  I'm getting good at the fit thing.

Take care all
Loretta
A few people have asked recently about the actual nature of Sonny's injury, so I am offering this explanation which I hope will be helpful.

When Sonny had his accident, he WAS wearing a full helmet and did NOT experience spinal cord damage. His type of injury, and many others, are collectively referred to as "closed head injuries" because the skull bone remains intact. Sonny experienced what is called a Diffuse Axonal Injury ("DAI") to his brain, which can be a confusing term. Here is a quickie explanation in layman's English.

When trauma occurs to the brain, nerve connections are damaged or severed. That damage is seen later in varying degrees of deficit in the patient's health. For example, Sonny experienced damage to the speech center in his brain, which is why he is unable to speak now. But the brain heals in amazing ways, and will try to heal broken connections for a long period of time, attempting to return to the previous pathways of activity wherever possible. Eventually those connections will either be repaired or they won't, and with Diffuse Axonal Injury (DAI) there is definite interference with those connections being re-formed. This means that eventually the brain will begin to try to make NEW connections around the damaged areas instead.

Imagine it this way: Let's say you have an old electrical panel in your home, perhaps about fifty or more years old. Some of the wires are frayed, some are exposed and hazardous, some are completely severed. Sometimes your lights come on when you push the switch, sometimes they flicker for only a second, and sometimes they fail to come on at all. You try to repair the damaged wiring and re-connect the wires that are completely broken, but still your lights are iffy at best. Finally, you give up and just re-wire the whole system, bypassing the old malfunctioning wiring and making new electrical connections completely outside of the old damaged system. This is pretty much what the brain tries to do when the previous connections are simply beyond repair...it begins to find new connections.

This example leads us to more questions than answers at this point, but at least it leads us somewhere! How many new connections can be made? Out of the billions of interrupted nerve impulses, how many can be re-connected? How does the brain even "know how to do this", especially considering that it itself is a damaged organ? How does all of this re-connecting equate into physical and cognitive function? Is it possible that Sonny's brain could eventually be restored to a point that he could walk...speak...read...write...? The answer to all of these and the thousands more questions we ask all the time is "No one knows", though those degreea of recovery from an injury this severe are not expected. We must remember that the number of patients who survive the severity of injury that Sonny had is very small...so small that deriving a helpful statistic regarding long-term prognosis is nearly impossible. But the questions themselves, the fact that Sonny is doing more now than he was doing even three months ago, and dare I say simply the person that Sonny IS, all lead us toward believing his progress of recovery will continue and that there are good things in store. 

Meanwhile, our goal is for Sonny to have as good a life as possible, knowing that his life now includes severe disabilities. Sonny smiles when he sees people he knows, and alwaya returns my kiss when I smooch him. He still enjoys music and pays attention when his favorite tv shows are playing. Sonny has not had a major seizure episode since April of this year, even with a reduction in his dosage of anti-seizure medication...definitely a victory!

In short, Sonny presses on now seven years after his accident. We hope that understanding his injury and prognosis will help friends and acquaintances to feel comfortable visiting and interacting with him, as we all understand that though Sonny lives in a very damaged shell, he is still in there.

Thanks for reading, and for standing with Sonny as he travels this road.
~Lorrie P. for Sonny



As I have been formatting the archived journal entries for posting here to the new blog, I came across one that contained several interesting facts. I thought I would re-share just a portion of that journal entry from September 5, 2010:

"Apparently, people like Sonny are quite rare...like we didn't all know that many years ago, right? But seriously, here are some stats for you...

1. Of accident survivors like Sonny, with the degree pf brain injury he experienced, only 10% come out of their initial coma. (We do not use the word "victim"...Personally I believe in the power of words and this is a very dis-empowering one denoting passivity and weakness. Sonny, "weak and passive"? Um...no. Sonny is a survivor, not a victim.)

2. Of that 10%, less than 1% become interactive and capable of basic functions such ass breathing without ventilator assistance, chewing and swallowing food, or speech.

3. The majority of those survivors experience only minimal improvement, usually remaining in a somewhat constant state without large degrees of noticeable progress.

So, what does all of this mean? Here's the math: 

4. There are 1.5 million reported case of traumatic brain injury in the U.S. each year, with roughly 85,000 resulting in long-term disability (that's almost 6% of all brain injuries!).

5. Of those 85,000, adjusting for major, moderate, and minor degrees of the assumption is that fewer than 1,000 people per year experience a brain injury similar in severity to Sonny's and even wake up.

6. Consequently, there is very little compiled data regarding those survivor's prognosis and recovery patterns, simply because they are such a small population!

That all being said, I'll go back to Sonny's massage and range of motion exercises. (Are you still with me? There's a prize at the end for anyone who reads this entire post!) Being aware of these numbers might seem staggering...and indeed, sometimes we feel like we are groping in the dark with not much direction. So, drawing on human ingenuity, the powers of the universe, prayer, positive thinking, and a fair amount of chocolate, we have persisted in learning all we can and will continue to seek out any and all resources that will help us to participate in Sonny's recovery."




Saturday, June 16, 2012

Sonny and Lorrie (sister) in June 2005
On September 4, 2008, Sonny was riding home on his Harley Sportster when a pedestrian stepped off the sidewalk directly in front of him. Attempting to avoid hitting the pedestrian, Sonny crashed his bike and suffered a massive closed head injury. Fortunately he was wearing his helmet or he would not have survived. He was unconscious for over a week, and when he awoke he was moved from Harborview Trauma Center to North Creek Health and Rehab where he lived up until just recently when North Creek announced their imminent closure. Sonny now resides at Health and Rehab of North Seattle on 133rd and Greenwood.

The doctors were not encouraging about Sonny's prognosis at the beginning. They said he would likely never be able to be off his feeding tube, would never be able to communicate...essentially that there was not much hope. But they just didn't know Sonny. :)

Sonny eats ordinary food now, and can manage finger foods by himself. He takes all of his liquids by mouth and is learning to hold a cup himself. He smiles and kisses loved ones hello and see ya later (I hate the word goodbye), clearly makes it known when he is happy/angry/sad or doesn't feel well, even though he as yet has not regained the ability to speak verbally...YET. In short, he seems intent on proving all the nay-sayers wrong!

Meanwhile, the day-to-day struggles for him can take their toll. When everything you do requires great effort, it can become very tiring. We try to encourage his friends both far and near to stay in touch whenever possible. Of course visitors are ALWAYS welcome, and we do bring Sonny home for visits pretty often. But even cards, letters, photographs and emails also help to keep him in touch with the world at large. I often call a friend and hold my phone up to Sonny's ear so that they can talk to him...he always smiles at familiar voices. :)

Sonny and I have matching thread bracelets...black as the signature color for head injuries, and red because it is HIS favorite color. We never take them off. His injury is part of him now, and also part of all those who love him. We stand together that way...he is my only sibling, my Big Brother who on numerous occasions showed up to be strong for his little sister.



We try to keep his facebook updated with recent photos and information about how he is doing, and we share all posts and messages that people send in. Seeing people's faces and hearing their comments reminds him that he is not forgotten...just quiet, but definitely not forgotten. So, you can all find him there on his facebook page, here on his journal/blog page, and/or on his main website at Sonny's Road. 

Sonny's address is:
13333 Greenwood Ave. Room #140
Seattle, WA 98133

His email address is:

Sonny@SonnysRoad.com


We welcome your comments and we hope you will walk with us, and with Sonny, if even for just a few steps along this journey.


Blessings,
Lorrie...Sonny's very grateful little sister
Lorrie@SonnysRoad.com

Welcome!


Welcome to the first post in Sonny's official freestanding journal/blog. In the days ahead, every journal entry from his injury on September 4, 2008 until present will be imported here. Until then, here are a few inspiring thoughts...

Sonny was injured nearly four years ago on the evening of September 4, 2008...it has been a long journey for him to this point, but his sojourn is far from over. He has struggled, cried (we saw it!!), laughed, wrestled, and triumphed over so many obstacles. Yet, his climb toward his personal summit continues. "Rome wasn't built in a day", as the saying goes...and Sonny's recovery happens slowly, sometimes with fits and starts, but it continues relentlessly forward nonetheless.

So, at his point we invite you all to walk with us on Sonny's road...you will notice the repeated theme of Ancient Rome and the amazing story of how that city came to be. This road is sometimes not a pleasant one, but always a beautiful one. There are many who say that Rome was amazing...others say she fell short of what she could have been. The blood of thousands was spilled within the bricks of her building...her history is not a pristine one, but a story speckled with pain, failure, shining victory, blessed progress, and everything in between. Funny, people tend to be that same way. But the point is, Rome became what Rome was ABLE to become...built with the sweat and determination of a people committed to her forward progress.

WE are committed to forward progress, as Sonny leads with his own efforts. Some will say that Sonny "was amazing in his recovery", others will say "he could have been so much more". But as with Rome, Sonny will become all that he is able to...and it will take the sweat and determination of not only himself but also many others to see him get there. Each day on the journey teaches us about life, love, and the amazing ability of a human being who tenaciously holds on and continues to grow. Some say how blessed Sonny is to have his family and friends around him as support...I say that WE are the ones who are blessed to learn true courage and unwillingness to fold when the cards dealt are not the hand we would choose.

Special blessings go to my Mother Loretta and Daughter Samantha, who were here from the beginning when Sonny was first injured. I was not able to be here until almost two years later...I remember countless times that Mom called me and held her phone to Sonny's ear so I could talk to him...she said he smiled. Seeing one's own child recover from a potentially deadly injury is unfathomable. My Mother has a heart and determination that amaze me, and I only hope to have that strength somehow imparted to me. Samantha was also was a vital part of Sonny's early days, and I have no doubt that her love sustained him even when others weren't sure of his awareness. I'm sure he knew his Mama and his Niece were near and watching over him. To say "thank you" to these women, those closest to me on opposite sides of a generation, would seemingly trivialize their connection. "Thank you" will never be enough...but they know....they were there.

Rome wasn't built in a day...Sonny won't be, either. But we will continue the work, stone upon stone...and we have the greatest Teacher a person could wish for. Sonny is obviously not giving up...so neither will we. Here's to the road...the journey...and every lesson learned that makes us stronger and more loving human beings.

Thanks and love to my amazing big brother, aka my Superman. He leaps tall buildings every day and I am awed by his spirit.
Our mantra has become and will remain: "Never give up".

Every blessing...
Lorrie