Merry Christmas and a Joyous New Year!

Much love from the Stone Family!

We call this work therapy!

Calendar Boy

Here he is folks, Mr. July!

Let me know if you want a calendar or three. They sent us quite a few!

A Few of Our Favorite People

On Saturday, Neil and Scott went to Robert Wood Johnson hospital to meet with some very special people. They saved us and kept us going last January--Neil's life, literally, and Scott's and my emotional lives. Here are some of them:

Glen on the left, Regina in the center, and Neil surrounded by nurses and staff from the SICU West.

Glen was waiting, just like Scott and I--sitting by Regina's side during those dark coma days. When the nurses kicked us out--er, invited us to leave--during shift change twice a day, we'd trek down to Cool Runnin's on the corner for a little curried chicken to bring back and eat in the atrium together, or just sit in the hospital cafeteria and dream out loud of a future reunion when Neil and Regina would both be awake and well and able to meet each other.

We had that reunion this past summer, and have been getting together ever since. But Saturday's trip was back to Cool Runnin's for Jamaican food and a trip to see the nurses we love so much. Even though they are strangers to Neil and Regina, the former patients were no strangers to them. I'm glad they could see the result-in-progress of their dedication and hard work.

We love you SICU staff! We love you Glen and Regina!

See here for Neil's first reunion with the hospital staff last April.

Don't Panic!

Jenga "therapy"

There are several theories out there about the prognosis for a brain injury. Some of the scariest ones say you pretty much get all you're going to get by one year--maybe 18 months. Fortunately, many, many individuals who have suffered TBIs have proven this to be false. Some say you can see progress for eight to ten years, maybe more. But there is much evidence that shows that relearning does begin to slow down at some point. Neil's physiatrist told us that by the end of year one, you're pretty much in the ballpark of where you are going to be. What does that mean? I don't really know, but it gives us a sense of urgency. I see Neil continuing to improve for years to come; I see his ballpark as very, very big. But I want him to be farther than he is now when that one year mark rolls around. We're almost at 10 1/2 months. I think it's time for some cramming.

Some who've helped along the way:

Erin--Speech Therapist Extraordinaire!

Samantha--Occupational Therapist student with a very bright future!

Note to Self: Next Time You're On TV...

...remember to get plenty of sleep, have someone else fix your hair, and EAT first! Two days ago it was time for more fun with the True Life crew.

I'm glad the camera was rolling as we got the good news that Neil's vision is improving. It was pretty exciting to hear his eye doctor say that he probably wouldn't need surgery. He gave him a lower prescription prism for his left lens and some new exercises to work on and wants to see Neil again in a month. We're so encouraged!

When we came home from the appointment, the tv crew sat us down for "formalish" interviews. They expect to use this material for voice-overs, but some of the video may by shown as well. Some of the questions were about details of the night of the accident--including how we were notified. (Two uniformed policemen knocked on the door at midnight, asked if I was Neil's mom, then asked me to sit down--in case you were wondering.) Of course I had a hard time keeping it together as we talked about such emotional stuff.

Some of the questions were very personal. It's hard to keep your head when a sympathetic producer is asking in such a kind way. Neil and I both felt a little nervous after it was all done--like maybe we talked too much, or shared some things we shouldn't have for a televised audience. I know their intent is to inform the audience and teach about what it's like to live with, and try to recover from, a brain injury, but will they care enough about Neil personally not to embarrass him in the process? What will be left in, and what will be left on the floor of the editing room? I'm having second thoughts, but it's too late--I already signed the release. They own our souls...I mean, whatever we said on camera.

And this brings me to the lack of food and sleep. I couldn't figure out why my mind kept going blank as they asked me questions about things I've talked about a hundred times before. Where was the information? I felt like I had a brain injury myself. It wasn't until after they left that evening that I realized I was running on half an apple and a little peanut butter, and maybe five hours sleep for the last few days. Low blood sugar--of course! And poor Neil! His neuro-fatigue may have started manifesting itself a little early because of the excitment of the day.

So, as I said, next time you're on tv...

Blessings in Abundance

This is the speech Neil gave at his Eagle Scout court of honor one month ago. It seemed appropriate to share at this time of giving thanks:

"Thank you for coming tonight. Now that this moment has finally come, I have a stronger realization of how much scouting has helped me, and will help me in my life.

The trail to Eagle is a long, hard goal. It would have been impossible to earn on my own without guidance from scout leaders to help me stay on the path. My family has helped me a lot with earning my rank advancements and merit badges, too.

Most of you are aware that nine months ago I was in a car accident and had a traumatic brain injury that has changed my life. Going through the stages of recovery has been a long and arduous path, and I am still on it. Just like the trail to Eagle, I couldn’t do it alone. I have been helped by doctors, therapists, teachers, family, and many others who care.

Because I have seen all of the hard work and dedication that people have given to my cause, I want to give back and help other people with as much support as I’ve been given. My scouting experiences have taught me to be a hard worker and to not give up on my goals. These traits have helped me in my recovery as well. I hope to pass these on to other people working on a worthy goal that seems far off and nearly impossible to complete.

In closing, I would like to thank my many scout leaders who have pushed me along, especially when I got distracted from my goal to advance. I would also like to thank all of my friends, family, and other volunteers who helped me with my Eagle project at Fairview Farm. I’m also very grateful for all of the support that has come my way during my recovery. And I want to thank my Heavenly Father for helping me pull through in all of my endeavors, be it scouting or my rehabilitation.

Thank you."

I echo Neil's thanks. We are so blessed.

Painfully Aware

On the phone with Scott:

Me: "Neil pointed out a dead raccoon on the side of the road as we drove home from school."

Scott: "That's awesome!"

And it was awesome. Because Neil notices things and he didn't used to. He looks around and makes comments on what he sees. He can find something in the refrigerator if you give him the general area to look in. Huge deal, this is. The problem is, there's a lot he can't see. He's still troubled with left-side neglect, so he wouldn't have seen the raccoon if it were on the left side of the road. He struggles to recognize faces of people he knows. His left eye drifts 30 degrees left of center.

Along with Neil's new awareness of his surroundings comes his awareness of what he's missing, and his vision issues are finally starting to annoy him. No one wants to feel handicapped. Hope we can lick this.

Soon.

Two Letters

Click on above images to enlarge

Pretty cool, huh?

A Picture Tutorial

This is what an Eagle Scout Court of Honor looks like.

And this is what it looks like when it's being filmed for a documentary.

This is what it looks like when your brother earns a million merit badges and a rank advancement.

This is what it looks like when you're giving a speech you practiced A LOT because it's hard to see the words and to keep your place on the page, but you do a great job anyway.

This is what some really proud parents look like.

And this is a really happy Eagle Scout!

True Identity Revealed

Happy Halloween from Superman!

What an Honor

That's about all I can say about Neil's Eagle ceremony. We were surrounded by such a loving, supportive crowd of friends that I was truly touched. People came from far and near to help us celebrate Neil's accomplishments for which we will be ever grateful. It was an evening we will remember for a long, long time.

Although his neuro-fatigue had set in a little earlier than usual due to the excitement of the preparations, Neil gave a heart-felt speech that he had been practicing for days. And he did well--even received a standing-ovation! He was moved by the occasion and all the attention, and so were we.

Some friends took pictures which we hope to post soon.

Thank you to all who helped, all who came, and all who sent their best wishes and contratulations. We love you!

The Eagle Will Be Landing

Fairview Farm--

Site of Neil's Eagle Service Project

Finally! Yes, finally Neil will officially receive his Eagle Award at a Boy Scout Court of Honor next week. Although he completed all his requirements and interviews last summer, we procrastinated a bit too long in planning the award ceremony. Big mistake. Just goes to show you that you never know what the future holds. Thanks to his kind scoutmaster, Scott and I got a little version of a court of honor for Neil as he lay in his hospital bed at Kessler last winter, but now, now we will do it the right way!

Wednesday, October 28th, at 7:30 PM. You're invited and we'd love to have you attend. It will be held in the church gymnasium at:

">99 Lamington Rd, Branchburg, NJ 08876. (That's 99 Lamington Rd--Blogspot keeps adding those funny symbols when I make it a link!)

URWA Executive Director Cindy Ehrenclou congratulates Neil on a job well done

I Got the Music in Me

Neil has pages that look like this, and others that describe exercises for his mouth--sounds to make, words to pronounce, etc. Because half his face is still struggling to respond to commands from the brain, we're hoping the neurons will find new paths through this kind of stimulation.

A couple of weeks ago, as Eric was practicing his trombone, we got the brainstorm that Neil ought to try making sounds with the mouthpiece. He used to play the instrument himself in middle school, so we figured he might be able to reconnect to those old memories and get his mouth to cooperate. Alas, no such luck. His lips felt big and useless and he couldn't pucker and tighten them to get the needed "buzz."

...Until a few days ago. He tried it again...and, success! Not only did he buzz, we attached the mouthpiece to the horn and he made music! I don't know that he remembers how to play specific notes, but his tone was good and it sounded nice. His left cheek still puffs out a little and occasionally you can hear some air leaking out of the corner of his mouth on that side, but this is a terrific start. It's even therapy for his left hand as he has to force his reluctant fingers into the right position to hold the trombone up.

Go Army!

Last Saturday's adventure: Army vs. Vanderbilt--West Point, NY

On the way Upstate

Walking through the campus



Here's what you get at Army games: paratroopers...

helicopters...

and really big guns!

Eric would have enjoyed this band, but he was busy marching with his own school band in Washington, D.C.

Scott explains the play.

Though this picture doesn't show it, we were on the edge of our seats for most of the game--very exciting!

Army won an amazing game! The team and cadets gather to sing the Alma Mater

Beautiful ending to a great day

In the car on the way home.

A much needed rest!

And Now For the Good News

February 20, 2009 - minimally conscious

Yeah, it was pretty bad. And the hardest part was that no one could give us any kind of prediction for the future. We carried on caring for, and loving this boy--just hoping for the best. It still blows me away when I think of his progress. Here is a little blurb about how he's changed in the last three months that I wrote up for the producer:

-----Neil has progressed immensely in so many areas in the past three months! He can now shower and shave by himself. He can dress himself. He walks with an even gait and even runs! He's done so well physically that Kessler has discontinued his physical therapy, though he'll continue with occupational (hand and vision) and speech.
-----He's easier to understand when he talks, and he has his sense of humor back! He smiles and laughs and even tells jokes. Conversations seem more normal now (or are we just used to his new way of thinking?)
He uses his left hand as much as he can--opening doors, carrying grocery bags, petting the cat. His stamina is improving, although he does get pretty tired by 8:30 or 9:00 at night.
-----Being back in school and among other people besides just family and therapists have helped with his loneliness and have given him a feeling of accomplishment. I can see an improvement in his confidence. (I think the experience with Real Life has helped with that as well. He's delighted with the interest others have shown in his story.)
-----His memory has shown marked improvement. Part of that has just come with time, but he's also learning to have some confidence in his memory and to give himself time to remember instead of asking Mom for the answer immediately. He's doing so well lately, that he remembers things that I don't!

Although we still don't know what the future holds for Neil, we have no reason but to hope for more progress because he hasn't slowed down yet!

Hard, Ain't It Hard

I think the TV show is a go. They have filmed Neil twice, and plan on coming back for more. Alexis, our favorite producer(actually, the only producer I know), asked me to answer some questions about Neil's challenges and progress to help them as they plan Neil's "story." Since it took some time and a lot of thought to do, I decided to share some of what I wrote on Neil's blog as well. So here are Neil's current challenges. I'll include the progress part later.

Neil's current impairments and challenges--

-----His left hand is stiff and spastic--some muscles are just too tight so he can't control his wrist and finger movements well. Botox injections have helped relax the spastic muscles a bit, and therapy improves everything He may need more Botox, and will certainly need more therapy. Because he is left-handed, Neil is trying to learn to write with his right hand. His writing is mostly illegible, so Neil needs to use a laptop at school and for homework and written assignments. Obviously being one-handed makes everything slower--showering, getting dressed, shaving, preparing food, eating, etc.
-----Vision is a problem. Neil's eyes don't work together. He wears a prism on his left glasses lens to bring that field of vision to the front. It helps, but Neil is tired of the glasses and not being able to focus properly. His handicap interferes with his being able to recognize people and remember new faces. It slows down his reading so he prefers a larger font. Because of difficulty with visual perception and acuity, he struggles with puzzles and seeing the big picture. He currently sees a neuro-optometrist and does eye exercises that we hope will help.
-----Neil's short-term memory is faulty. It's hard for him to remember new things--names, dates, assignments. He knows it's a problem so he perseverates (or obsesses) about what he might be forgetting. He constantly asks me when appointments are--even though they may be weeks away. His speech therapists encouraged him to get a smart phone and that's helped a lot. Now he puts everything in his calendar and keeps notes of important things he wants to remember for later.
-----He has a short attention span and is currently taking Ritalin--probably will be for a long time as he had ADD before his injury. He doesn't have the patience for TV. Even a good book can't keep him occupied for long. Combine this with his short-term memory issues and you can understand how school might be a challenge! His goal is to attend college for computer training or business management (remember the taco stand?), but right now he still needs a lot of help in school.
-----Neil has always been very social and had lots of friends. His brain injury took away his social filters and now he finds it hard to communicate appropriately with people. He can't understand or read non-verbal cues or subtleties in speech so he easily misinterprets others. He has trouble remembering that you can't always say what you are thinking, so he says (or texts) things that he shouldn't. He sometimes confuses people, so he refers to conversations he had with someone else. These challenges, combined with the fact that many of his most loyal friends have left for college, have left him lonely and feeling somewhat friendless.
-----He is still working on his speech. He can't seem to get much inflection or intonation in his voice so everything comes out in a monotone. He doesn't have a lot of volume control either, so he can be hard to hear and understand.
-----His processing speed is slow and his school skills are still lacking--reading, writing, math (we haven't even begun any math rehab except some informal quizzes at home.) He's probably at least a couple years behind where he was, and relearning is tough.

******Neil's a trooper and doesn't really complain much. His good attitude has helped tremendously with his progress which I'll report on in an upcoming post.

Bye, Bye PT

"Bye, bye PT,
I'm full of glee!
Wouldn't you agree
If you were me?"

--Neil

July 6-- Neil was still a little too weak to be doing any standing exercises unsupervised so he used to warm up sitting down on this machine

It's been eight months since the accident and Neil is finished with physical therapy. I can hardly believe it. He's scored as high as you can score on Kessler's PT evaluation, and though he still has a little work to do on his balance and strength, these will get better with time and some working-out that doesn't require the specific skills of a therapist.

August 4--Neil was jumping over the bar on the floor. He did a lot of jumping and always had therapists close by.

We will, however, continue our tri-weekly trips to Chester for occupational and speech therapies. OT works on his hand and wrist problems and helps with vision exercises. Speech works on his...well...speech, of course, but also cognitive skills and memory.

While we are cutting back on Neil's therapy at Kessler, we are adding to his school schedule. Along with his Lit. and computer classes, he has added a speech class two days a week, and will be adding some service time with the media teacher the other three days. Next week he will begin his adapted PE class. I'm glad he'll still have some supervision as he works to build his strength and physical skills. On Thursdays he also has some one-on-one with a home study teacher for extra help with reading and writing.

October 1--I loved some of the creative things his therapists had him do. One of his favorite activities was hopscotch!

And, Neil's taken up running! When we go out together, I make him stay with me until we cross the street at Short Hills Rd. then I let him take off! He's just too fast for my slow old-lady legs and seems to feel some real freedom and satisfaction from tearing down the street on his own. I'm so proud of him!

The Better To See You With

Not only do these "fab" colored glasses look cool, they help Neil exercise his eyes. He's still having some trouble getting them to work together. He can make one or the other look at you, but never both at the same time. He uses the glasses with a 3D chart to try to focus on two concentric circles. If he can make one circle look closer than the other, his eyes are cooperating. Believe it or not, it's tough work!

Right now, Neil is still wearing a prism lens on the left side. This forces the two eyes to work together until Neil can do it on his own. He's very anxious to be rid of the prism because he wants to wear his contact lenses again. The neuro-optometrist thinks it will be soon. In the mean time, it's practice, practice, practice.

Peace and Comfort

We're sending our thoughts and prayers to another BRHS family who is suffering tonight. God bless you.

Just Practicing

Spicy seasoned chicken, black beans, grilled onions and peppers, lettuce, salsa, and sour cream on a corn tortilla. A Tons of Tacos possibility!

Slán Laet Sarah

Although Neil has been watching his friends leave for college for the last month or so, Sarah's departure on Wednesday was especially painful. It's not just that she's been such a good friend for the last four years (and yes, she certainly has been!). It might have something to do with the fact that she's so far away now--Trinity College in Ireland! However much Neil will miss her, she's living out a dream and we are all happy for this opportunity she has. Thankfully, Neil and Sarah have worked out a way to keep in touch that won't break their respective communication budgets.

Go raimh maith agat!

Many thanks Sarah, for teaching Neil to snowboard, for being his listening ear, for your many visits to the hospital, and for starting his facebook page. Thanks for your countless acts of kindness and compassion. We love you and wish you all the best!

Maith thú!

Hitting the Books

First day at BRHS for the boys. Everything went according to plan. Everyone was happy. Looks like Eric will have a good year as a Freshman with some challenging classes and marching band. Neil is starting with just two classes: Literature in a small class environment, and Computer Repair. He'll be adding a couple more classes as he becomes ready--maybe in a week or two. He's been assigned an aide to help him get to where he needs to be and to assist in class if he needs it. I have a feeling he won't be needing this kind of help for long. He seemed more than ready for the educational and social stimulation. Even though he'll only be at school for an hour and a half, it's going to be very good for both of us. Wonder how long it will take for me to get over my separation anxiety...

Food, Glorious Food

In Neil's pre-accident life eating was a social thing. He could down a lot of hamburgers if he were with friends and he thought it would make them laugh. At home it was a different story. He often forgot to eat and had to be reminded. Even then, he'd only eat if I made him something. Laziness was more important than nutrition.

It's funny what can change with damage to different parts of the brain. Food has become important to Neil almost to the point of obsession. One of the first things he asks every morning is, "What's for dinner tonight?" He doesn't mind eating the same current favorite at every meal--in fact, he prefers it. He loves to get in on planning the week's menu with his dad and never hesitates to come shopping at the grocery store. Along with the planning and the eating, he wants to be involved in the preparations.

After spending weeks researching which computer component he wanted for his birthday, someone suggested a George Foreman grill and it suddenly became obvious. Now he loves to cook for friends, family, and of course, himself. Though he still needs some supervision, it won't be long 'til he's grilling on his own. Fortunately for Neil, he's got the metabolism that can handle his new penchant for eating. He burns a lot of calories in his physical therapy.

A couple of weeks ago Neil came into my room at 3:45 in the morning. He had heard me coughing so assumed that meant I was awake. Apparently he'd been awake himself for a few hours just waiting to share an idea that had come to him in the middle of the night: Tons of Tacos--a food stand that would sell delicious tacos for a dollar a piece. Who could resist? Neil's got a dream now and I dare anyone to stand in his way. Chipotle--look out!