Formerly "Neil Stone Updates"

Saturday, March 14, 2009

You're Invited

If you're ever up West Orange way, we'd love to have you stop by. I can't guarantee any refreshments or entertainment (although we often see deer and wild turkeys from Neil's window), but there'll always be a grateful parent or two and a really sweet young man who will be happy to see you.

Let me give you an idea of what typically goes on in Neil's day, so you can plan your visit accordingly. Neil gets up and dressed around 8:00 for breakfast in his room at 8:30. Then it's off to Physical Therapy at 9:00 where they work him hard--lot's of walking and stair climbing, some kneeling, a little wheelchair practice, color recognition, object manipulation, and so on. By 10:30 when he's done he's pretty tired, so it's back to the room to chill out for about and hour (Nerf dart shooting, anyone?) Speech Therapy is in Neil's room at 11:30, usually. Lunch is at Noon. Occupational Therapy begins at 1:00. OT is usually more of the same as PT, although sometimes they have him work on putting on a shirt, or answering a phone. (How do you answer a phone when you can't speak? Just asking.) He's done by 2:30 and he's exhausted.

At that point, the afternoon is usually ours. Sometimes we do our own massage therapy to give Neil a chance to relax a little. He loves it. We often take walks around the grounds. We'll hand him rocks to throw from his chair or give him a stick to hit stuff with. (And no, we don't hit the deer or turkeys.) You're welcome to join us. There are plenty of rocks and sticks to go around.

Dinner is served around 4:30 or 5:00. If it's too cold after dinner for another walk, we sometimes go the the second floor for some air hockey. Neil is getting pretty good considering he's still in a wheelchair and only has one usable arm. Care for a match?

By 7:00, the day is winding down. Back in the room, he might try a little TV, but his poor vision and short attention span make that a brief activity. We often work on reinforcing what he did in therapies--flash cards, puzzles, conversations about what day it is and where he is, asking him questions and listening for his quiet answers. He starts getting ready for night time around 7:30 or 8:00, so you may find him in bed if you come that late, but he won't be going to sleep until about 8:30.

Weekends are all ours. Except or one short (45 minute) therapy and his regular mealtimes, Neil is free to visit any time.

At the risk of making this post too long, I do want to let you know what you might expect from Neil if you come. You could be surprised that he may not look at you. Focus and attention remain an issue, and his vision is still a problem. When you talk to him, feel free to ask him questions, but be prepared to listen closely for his answers. He whispers very softly, and it can be hard to decipher what he is saying. Don't give up. When he gets frustrated, he'll often just give a key word that can help you figure it out. For instance, shortly after Scott and I had a discussion with each other about Scott's finding the directions to visit our friends Glen and Regina, Neil tried to tell me something I couldn't understand. After several futile attempts, he finally just whispered, "GPS." I didn't realize he had been listening to our conversation, and he was offering the use of his GPS!

Here's a link to our place:
Kessler Institute for Rehabilitation
1199 Pleasant Valley Way
West Orange, NJ 07052
William Stone is in Room 3024.
Past the Information Desk you'll see elevators on the right. Go to the third floor. Turn right at the nurses desk and proceed to the locked double doors. Push the button on the wall and wait until they buzz you in. Please knock if the door is closed.


Artie's Aunt Nancy said...

I can't help but find myself in awe most of the time I am reading your posts. I wonder how you have so much left to give to us when your days, while often so rewarding, must also often be so draining. Thank you for giving us such detail - I could actually visualize every part of Neil's day as I read and felt as though I was right there....hope to get a chance soon. Until then, much love and prayers for continued blessings.

Meghan, Carson and the Girls said...

I so wish that we lived near you guys so I could come and visit. I would love to give Neil hug and tell him in person what an inspiration he is and how proud of him we are. But also to play some nerf shooting and air hockey! :) Throwing rocks sounds fun too! Love you guys!

Molly said...

I would be there in a heartbeat if I could. I think there are many of us miles away who would be there daily if we could. The GPS story is very funny, and so cute. It sounds like Neil is pretty busy during the day, they're working him hard! Has he tried any texting by any chance? Just curious if that was something he oculd remember how to do. Let me know when he can, I'll send a few texts his way! Keep up the hard work~! Molly

Lori said...

Many of you have asked about Neil texting because you know all too well how that was second nature to him. Unfortunately, his vision doesn't seem to be good enough yet to see anything that small, and he still struggles to recognize letters, so reading is going to be a while coming. He sometimes holds the phone in his hand and pushes random buttons, but I think it frustrates him that he can't really use it.

Meredith said...

I could understand his frustration. I always wondered if it would work by touch because what kid actually looks at their phone to text? But I remember from Mom's therapy the "aphasia" I think it is called not being able to get the letters out you want to use? I am sure I am all mixed up. But I know it is probably frustrating.

We would love to come and visit the deer and wild turkeys and of course Neil to do some nerf dart shooting and eat some jello or something. We would be there in a heartbeat.

Love you all!!

E. Baird said...

This is Emily Baird. I've been following your blog off and on since Meredith left a comment and link on a website devoted to my daughter Natalie's recovery from a car accident on January 7. (Somehow she is connected to a family we know.) I am so glad things are improving for Neil every day. I can relate in some ways to many of the things you are going through. Natalie spent about 2 weeks in ICU mostly in a coma, 1 week in progressive care, then 3 weeks in a rehabilitation hospital. The only surgery she had to have was for a broken jaw. She had a tracheostomy as well to facilitate breathing after jaw surgery. She's been home since February 21, going to outpatient rehab now. She is doing almost everything she did before now, but still struggles with memory, and some weakness on her left side. She is also mourning the death of her best friend who was killed in the accident. Two of her greatest talents and interests before the accident were cheerleading/tumbling and singing. She's working to get her singing voice back, but the other will have to wait until the doctors OK her for that.

Our prayers are with your family. We hope that Neil will continue to make great progress. As with our daughter, the professionals kept telling us that in their favor is their youth and strength.

God bless you.

Diana said...

I'm glad I was able to see Neil today, I was so happy that he recognized my mom and I. He's always in my prayers!

I hope he enjoyed the music I made for him! :)

Anonymous said...

Woops! I meant to say Saturday! Not today!