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!