Formerly "Neil Stone Updates"

Tuesday, March 31, 2009

If You're Happy and You Know It...

As Neil becomes more aware of his circumstances, he seems to be making more efforts on his own to recover what he's lost. For instance, I think he realizes he is a little deficient in the emotion department right now. He wants to be able to laugh at a good joke, and feel some joy when he shoots a basket, but right now it's just not coming naturally. So this evening, when we were playing a little air hockey, he raised his fist in the air when he made a goal. I applauded his gesture and asked him to take it a step further--I wanted some facial expressions. Neil delivered. He tried the big smile. It almost looked sincere. When I asked him to, he added some raised eyebrows. The look was priceless, and I got the feeling he was enjoying it. When we went back to the room, I had him look in the mirror so he could see the effect for himself. I think he was pleased. I know I was. Maybe recognizing and expressing feelings is another thing the brain needs to relearn. I'm thinking I'll add emotion therapy to his schedule next. We'll tickle him, tell funny jokes and sad stories, and teach him to give a Bronx cheer. Any other suggestions for the curriculum?

Monday, March 30, 2009

Mom, the Slave Driver

Usually during therapy time they prefer parents not be there. Neil needs to focus on the task at hand. Today, he worked on the treadmill and they needed an extra hand, so I stepped in. I've somewhat described the process before. Neil is secured with a harness as he walks so that he can't fall and injure himself. One therapist stands behind him and holds his hips even. Another one sits on the floor and helps his left leg move correctly. I get to stand in front of him and keep him looking forward. Right away, Neil noticed the big red emergency shut-off button on the control panel. As soon as it caught his attention, he wanted to push it. That gave me another job--standing in front of the button so he couldn't see it. But he knew it was there. After just a few minutes of a pretty intense work-out, his short attention span and his fatigue got the best of him. Neil wanted off. "Stop," he said to me several times, knowing I had the button close by. I encouraged him to keep going, extolling the virtues of hard work and exercise. He wasn't buying it. He asked me to push the button. He tried to pull me out of the way so he could. I tried to change his focus.

"Every time you want to say, 'stop,' say 'I can do it' instead," I told him.

He said, "you can do it."

"No, I'm talking about you. You can do it."

"I can push the button," he said.

"No, you can walk. You can work hard. You can get better."

Then he told me to sit down. And no, it wasn't because he thought I might be tired.

After ten minutes, the PTs let him sit down to rest and cool down. He admitted he was proud of himself for sticking it out and said he understood how important it was for him to work hard to build up his strength.

When we began round two of the walking cycle, it didn't take long for him to forget our little discussion and he was ready to quit again. "Stop it," he said again. When I tried to encourage him, he just said, "Please stop." Okay, now I was feeling pretty bad, but I knew he could do this. He'd shown he had endurance before. When he could see I wasn't budging, he gave me a very earnest look and offered, "I'll give you five bucks!"

I honestly don't know if he was kidding or not. I laughed it off and told him his health was more important to me than his money, but I think he was serious. Just goes to show you how hard this job is for him. It's hard for us, too. I'm glad we can find occasional moments to chuckle ;-)

Sunday, March 29, 2009

Many, Many, Many Thanks

Neil's ticks have subsided somewhat. Not quite so many handshakes. What seems to have taken their place is his need to express his gratitude. It’s “thanks” when we hand him his napkin for the fifth time and “thanks” when we wave to him from across the room. We hear it every time he gets the ball in a game of catch. It got to a point the other day where he couldn’t stop, even when I gently asked him to--not trying to be mean, just trying to reteach appropriate social behaviors. After hearing it every few seconds for the previous few hours, I said, "Neil, I already know you are grateful for me." He whispered, "Yes, but you don't know how much." I promptly kissed him and said my own thanks.

At the risk of sounding socially inappropriate, I have to echo Neil's sentiments. Thank you again and again, to so many who have done so much for Neil and for us. You don't know how grateful we are.

Saturday, March 28, 2009

A Changed Perspective

Lori is staying late tonight with Neil so it seemed like the right thing to offer to update the blog tonight. Back to your regularly scheduled (and no doubt preferred) programming tomorrow.

Today was a good day up at Kessler. As it was Saturday, Neil only had one session of PT but was able to go outside again for it. He and Kirk took a walk, climbed some stairs and even walked on some unlevel terrain. After that, they went back inside to the gym to work on balance. The therapists do such a great job and we are so appreciative of them. The two that Neil has worked the most with are rotating down to the spinal cord injury floor next week and we will surely miss them but are confident that their replacements will do a great job, also. A highlight tonight was that Neil was able to brush his teeth while standing at the sink in his room. Although tomorrow is Sunday, Neil has a full schedule of therapy to make up for some lost time during the week when we went to visit the ENT doctor.

Being up at Kessler most of every day, there is opportunity to greet and interact with the other patients that are on the same floor as Neil. Folks from all ages and walks of life find themselves in the situation of trying to recover from brain injury. Not surprisingly, I feel a very close connection to these people and my heart aches for them. Some have relatively minor injuries and they come and go quickly. Others with more serious issues stay longer. Some are awake, alert, and communicate. Others not so much. I often wonder what their lives were like before and when possible and appropriate, I try and get to know them. For example, in a sad bit of irony, there is a patient on Neil's floor currently who happens to be a rehabilitation physician. I pray for this man that he might be able to return to the great work he was doing. Another fellow, referred to as "Rock Star" by many (including me) was discharged recently to go home. Although he always told me "you look tired" (very accurate BTW), I looked forward to bantering with him a bit each day. I wonder what he did for a living before his injury and what his life was like and what it will now be like? I think of him often. Stepping into Kessler each day from a world where things that shouldn't matter much sometimes do, has taught me much and I hope I can carry with me some of the things I have learned about love, caring, hope, struggle, relativity, and the list could go on. Although I wish we had never had to go through this, the learning experience and more importantly the "feeling experience" has left me changed--hopefully not soon to be forgotten.

Friday, March 27, 2009

Walking On Sunshine

Nice day for a walk today, didn't you think? Well, it was here in New Jersey, anyway. Neil got to take a little stroll down the sidewalk with his physical therapists. He also walked up and down some stairs outside. He likes to walk, stand up, and stretch his legs. He even looks for reasons to get up, like walking across the room to throw something in the trash. Too much time in a chair everyday will do that to you. He just gets antsy. I like to think of it as motivation for him. We're just trying to temper his enthusiasm for getting up with some good sense about safety.

Neil continues to stay positive and relatively content. His sunny attitude makes him easy to be around and a pleasure to talk to. In fact, it's fun to try to engage him in conversation where he has to participate more than just answering yes or no. We can almost see those gears turning as he comes up with some interesting things to say. Most of the time they make sense--sometimes they don't, but at least he's thinking!

Thursday, March 26, 2009

Deja Vu

Why does it feel like we've done this before? That vacant, trusting look on his face is so familiar--as is the way he wants to hold my hand, or sit right next to his dad instead of a few feet away. When he wants to get out of his chair before he's finished eating (even though he admits he's still hungry), I could swear I'm repeating the same things I've already said about staying in your seat until you're done. Guess we've gone back in time a bit. He'll grow out of this, just like he did before. In the mean time, I get to enjoy my little boy again.

Funny thing is, at other times, he can be quite alert and attentive to what's being said. He may respond the way he used to before the accident. Then sometimes, he's in a kind of dreamland where odd things are happening around him that he can't explain. He takes it all in stride and I guess we should, too. It takes time for a brain to rewire itself and figure out the world again.

Neil has a new bed. It's kind of like the bed tent he used to have as a kid. He loved that thing--used to take it outside and drag a sleeping bag, some snacks, and a tape player into it. This bed also has a tent on it, with zippers that only open from the outside. We weren't sure why his doctor felt it was necessary. Now we do. Neil has a tendency to get up and walk...on his own. The problem with that is his tentative balance, his disorientation, and his unprotected brain on his right side. It's too important to take a chance on his safety, so we are all going to make sure he stays put during the night. We'll also have to be more diligent during the day. If we don't watch him at all times, he'll get up to sit by us, close the door, go to the bathroom, or who knows what. Any of those things would be fine if some one were standing by his side reminding him to lock his brakes first, or walking with him in the right direction. I love the fact that he is more physically capable and confident, but this phase scares me. I do believe it's a step in the right direction, though.

P.S. Neil's feeding tube was removed this morning, so no more tubes or attachments! We just have to make sure he eats enough. He had his first pizza and a Burrito Bol from Chipotle this week. If that doesn't add calories, I don't know what will!

Wednesday, March 25, 2009


Neil had a good day today, but I've got computer issues tonight. Check back tomorrow.

Tuesday, March 24, 2009

My Hero

Not Sherman, although I do love that dog. It's the kid with the cool snowboarding helmet. We've gone through a whole range of emotions and feelings for, and about Neil since the accident, but what I think I'm feeling most lately, is admiration. It is inspirational to watch him attempt to climb insurmountable obstacles every day. He is asked to do what can't be done--"move your left hand," "read this word," "pay attention," "talk so I can hear your voice." And yet he tries, and keeps trying. He may be confused about what's going on in his life right now, but he knows he can get better, and he trusts those people who are trying to help him. Despite much difficulty maintaining his focus, he stares intently at the speech therapist and makes every possible effort to do what he's asked. He attempts a task over and over again. He walks on the treadmill till he works up a sweat, takes a short rest, and walks some more. He will admit he's tired when asked, but I've never heard him complain.

All this, and he remains kind and polite. "Thank you," he says, several times a day--when we put his shoes on, when we bring in his lunch tray, when we remind him how well he's doing. He shakes hands like a gentleman, even with strangers, and waves to everyone he knows. After a hard day of therapy, Scott or I will sometimes give him a back rub to help him relax a little. He almost always reaches around to either of our backs to give us a rub at the same time. He says, "thank you for coming" when we arrive in the morning, or we're getting ready to leave at night.

I so appreciate and admire his determination. He is truly a joy to be around. I just hope some of his grit will rub off on me!

Monday, March 23, 2009

Field Trip

Neil got to leave Kessler today to visit the ENT specialist. They scoped his throat to see if there was anything wrong with his vocal chords. Everything seemed to be fine, except that his chords don't close all the way when he talks. That's why we hear nothing but whispers. The doctor said it could be solved with work from the speech therapist. When we got back, the speech therapist pretty much said, "what do you think we've been doing for the last four and a half weeks?" Well, he didn't exactly say it like that, but you get the idea. It's just going to require more time, work, and patience. I think we got that down pretty well.

We can't wait to hear him talk, but we're starting to get a bit of an idea of what he's thinking. Even though it's only whispers, he tries to communicate more. Also, he's getting a few more readable text messages off. What we're finding out is that Neil gets a little bit confused sometimes. He usually thinks we're in Oregon or that we're getting ready to go to Grandma's house. He thinks his sister Alison is still here. At least he doesn't seem stressed by any of his confusion. We know he feels loved and safe with us--another reason why we feel so lucky to be able to be by his side during all his waking hours.

Sunday, March 22, 2009

The Forest or the Trees?

Because of distance, school and other commitments, Sunday is usually the only day that Eric gets to come and see his brother. So Eric has become our gage--our view from a distance, if you will. It's hard for Scott and I to see Neil's progress when we are there day in and day out. Time runs together and we lose our perspective. So today we asked Eric what changes he'd seen in Neil compared to last week. Here is what he shared: It's easier to understand what Neil is saying and he talks more. He seems more "with it" and he can walk on his own. He also seems to remember more things.

Thank you, Eric, for helping us enjoy the forest instead of bumping into the trees.

Saturday, March 21, 2009

People Who Need People

Too many late nights and early mornings leave us a little scatter-brained. As a result, Scott went to the hospital this morning with both our keys, so I was stuck at home today and Scott had a really long day at Kessler. At least our kitchen floor got mopped for the first time in months.

I was feeling bad for Scott because, as much as we love being with Neil, it can be a tough job caring for all his needs, working on his homework, and keeping him entertained all by yourself for the whole 13+ hour shift--especially on a weekend with no therapy. Then I heard about the visitors--and there were many today. Friends of Neil's, friends of ours, and very thoughtful acquaintances. I was a little jealous not being able to go to the party.

I've come to a realization as we've progressed through this life-changing experience: people are good. They are kind and caring and filled with love. I can say that because I've seen it. I've been the receiver of that loving kindness and so has each member of our family. God has blessed us with medical miracles as Neil's life was spared and he continues to regain his abilities. And he's blessed us with a community of friends, neighbors, family, and people we don't even know who have surrounded us with more goodness than we ever could have dreamed of. Thank you for the dinners, the rides, the errands, the cards. Thank you for the fruit, the flowers, the toys, the pajama pants. Thank you for the visits, the emails, the texts, the messages. Books, letters, phone calls, listening ears, goodies, stuffed animals, lunches, hugs, tears, prayers, comments, smiles, good wishes, good thoughts, good examples.

A few weeks ago, Neil's scout master came to visit and brought Neil's Eagle Scout award. Even though he had earned it last summer, we just hadn't been able to arrange for his Court of Honor yet. We had a brief little tear-filled ceremony in the hospital room with the promise of a real one in the future when Neil is ready for it. I don't know how his scout master knew, but that was exactly what two grieving parents needed. Yes, people are good and we are very lucky.

Friday, March 20, 2009

The Eyes Have It

... a new device to help him see, that is. The optometrist took away Neil's patch and put a prism lens on his glasses. This is designed to help the two eyes learn to work together. I tried wearing them, but the lens made me see double. Sure hope it works. It may take some time, but it will certainly make Neil's life easier to be able to see correctly again.

Speaking of seeing, he spent a lot of time this evening trying to make his phone work for him. He pushed familiar buttons, but without being able to see what he was doing I think he was accidentally editing his contact information. For some reason he was convinced it wasn't his phone. Sometimes he handed it to me with a message he wanted to send and I had to tell him it didn't make sense. Again, he didn't want me to help him. Then, at one point he passed the phone to me with a message for his dad. It said: "PSorry i have this phone for a while sorry het my messages dont make sense". I nearly cried! I let him know it absolutely DID make sense, and I think he was pretty happy. That doesn't mean you're all going to get texts from him all of a sudden, but then again, you just might. Unless of course, he erased your phone number by mistake.

Thursday, March 19, 2009


To Tom, Alex, and any other lucky individual who received a text from Neil today, congratulations. Now let me explain. Actually, I'm sure you've already figured out why your message was nothing but gibberish. Neil was thrilled today to have enough focus to be able to use his phone. He immediately began the process so familiar to him of texting friends. It soon became apparent he was frustrated. Unfortunately, he can't see what he's typing or who he's writing to, and his short attention span keeps him from pressing the keys the right number of times. I'll bet you could figure out what your message was supposed to say if you analyze which keys are connected with the letters he wrote. I offered to help him text what he wanted to say. I offered to read the replies and the many messages left after his accident. He didn't want me to. Whether it was because he didn't want me reading his private mail, or he really thinks he sent legible texts, I don't know. Anyway, I'm guessing Neil sends his best to you all.

Let me just say, we love Sherman. I found out (for those of you who have asked) he is 75% lab, 25% golden retriever, specially bred in California to be a companion dog. I guess they've figured out it's the perfect mix of breed for the job. I'll bet nearly every patient who leaves Kessler is ready to get a dog when they get home. But I don't think you could duplicate Sherman. He is very special.

Awesome stuff Neil did today: went up and down several flights of stairs in the stairwell (with help, but not much); used his deltoid and tricep muscles in his left arm; played some mean basketball in his room with a cool set from an anonymous friend (thank you!); spelled "chair" and "sweater" among other things for Fred, the speech therapist; and tried snowboarding using a computer program hooked up to a board!

One more cute moment: I said a prayer with Neil tonight before he went to sleep and I left for home. Among other things I prayed that I might drive home safely. As I was gathering my things to go, Neil very earnestly said, "Don't drive off any cliffs." Thanks for the good advice, Neil!

Wednesday, March 18, 2009

Learning to Remember

Perhaps I sounded a bit hopeless and negative in my posting from last night. I apologize. I love to tell about the new feats Neil is able to accomplish, and share some of the things he says that show he's thinking. What I don't usually write about are the things that don't go so well. I don't want him to read this blog some day and be embarrassed. So if we sound discouraged when everything seems to be rosy, maybe everything isn't really rosy. That being said, things were actually pretty rosy today! Squirminess and inattention aside, Neil had some positive experiences we can share.

During therapy, he got to walk Sherman, the therapy dog with some assistance. Good thing Sherman is trained for what he does, because sometimes it's hard to remember to hang on to that leash. This afternoon the recreation therapy department hosted a yoga class which Scott took Neil to. He seemed to enjoy it and it helped him get some of his wiggles out. Of course everything was done with the patients in mind so they could stretch in their chairs.

And there may be some good news about his left arm. In PT they said he seemed to be able to bear some weight with it, Sherman's handler said he felt some resistance from that arm, and Scott saw it trembling a little bit at one point. That hand has always been cold; today it was warm. Neil's doctor says it still may take some time, but those are all good signs.

One of Neil's biggest challenges is going to be retraining his brain to make new memories. I'm not sure just how we do that, but we often ask him questions about current events in his life, like the day or month. We remind him about what he did in therapy and praise him on his efforts. We quiz him on his visitors after they leave. Please don't be offended if he doesn't remember that you came to see him. Just leave your name tag on the poster that his friends made so we can prove to him that you were there. His doctor assures us this is normal for a brain injured patient, but it's hard to imagine how he can forget simple things like that and yet remember Brett Lacey's swimming pool from our Sioux City days. Ah, what an interesting organ the brain is. He'll get this. He will.

Tuesday, March 17, 2009

Finding Neil

First thing in the morning, just before bed, and at occasional random moments throughout the day we see little glimpses of him--when he "pops" his good arm and neck, in simple conversations when we hear familiar responses, the way he snaps his fingers. When I came in his room this morning he whispered, "thanks for coming." When we say we love him we hear a faint, "love you, too." He's sweetly affectionate now, which he always was outwardly as a little boy--more discreetly as a young adult. When I told him about this blog and that many people, even ones he's never met before are reading about him and praying for him to get better, he said, "Seriously?" Today he asked for his cell phone and was disappointed that it was out of "juice" and couldn't be recharged. Be assured, fixing the phone is the first thing on my agenda tomorrow morning. We'll find a way to help him reconnect, even if he can't read or spell yet.

Neil's long-term memory is pretty sharp. He told his therapist he was from Washington, and moved to Iowa when he was four--all true. He was able to recall his Iowa neighbors even though we haven't lived there for eight and a half years. Short-term memory is a little fuzzier. He continually thinks it's January. Not hard to believe that, since he slept through February. Even though we have told him about his car accident, he insisted to a therapist he was injured while snowboarding.

Neil will sometimes initiate a conversation, and that's when things get tricky. With no voice, little breath control, and an unresponsive face, it can be very difficult to decipher what he's saying without any frame of reference. He very patiently repeats himself over and over again, while we get closer to hear and try to read his barely moving lips. Often, we all just give up.

And then there are the repetitive ticks which can get pretty distracting during the day. Maybe it's the pressure of his therapy, or fatigue from all the work, but he can't seem to get enough of shaking our hands or patting us on the back. Those gestures, combined with his short attention span, can sometimes get us a little discouraged. And we'll miss our Neil.

Then evening rolls around and he starts to mellow out a little. He'll talk to Grandma or a loved one on the phone with appropriate responses to what they say. (Yes, we do have to relay what he is whispering.) He'll carry on a conversation or just listen to music while he gets a back rub from Mom or Dad. And we'll miss our Neil some more. We love him so much. We know he's in there. How much of him we will get back remains to be seen.

Monday, March 16, 2009

Sky Diving

We switched helmets a couple of weeks ago. Don't know why we didn't think of it sooner. The hospital-supplied head gear was large and heavy--it looked like a clear, plastic football helmet. Neil could hardly hold his head up when he was wearing it. Someone finally got the bright idea to bring his snowboarding helmet from home. It's lightweight, comfortable, and familiar. Oh, and doctor-approved, as well. An added plus is that Neil looks like an athlete--pretty cool!

Today, Neil's therapists felt he was ready for the treadmill. Even with the progress he's making with his walking, he is still slow, weak, and unbalanced. The treadmill can help with all these areas. First they strapped him up to a harness around his torso and his legs. Then they attached the harness to hooks that suspended him above the treadmill. With his new helmet and all that gear, he looked like he was ready to jump out of a plane--something he's always wanted to do! Maybe this activity didn't provide quite the same thrill, but it was a lot of work for him and a great accomplishment. With the harness on, Neil was able to walk with a normal gait and take bigger strides than he can when he's walking around the gym with his arm on the shoulder of a petite therapist. He walked for three minutes, then again for five after a short break. It may not sound like much, but he was going pretty fast, and it was a little scary for him not having something to hold on to. They want him to do it again tomorrow. I believe his fearlessness is going to give him the determination to cooperate with anything they give him to do. But as a mother I've got to ask myself, what am I going to do if he gets well enough to actually go sky diving? He'll certainly have earned the chance!

Sunday, March 15, 2009

Ever Have One of Those Days...

...where you just don't have your A game? You know, where you're not at your best and feeling your sharpest? Yeah, me too. So maybe it was one of those days for Neil today. Perhaps it had something to do with it being the weekend so he was off his regular schedule. Anyway, perseverations abounded, conversations were short, and so was his memory. I'm sure grateful for visiting friends who took it in stride.

On the other hand, he sure wants to walk. In fact, he wants to so badly that he does. I mean, he tries to stand up out of his chair and start walking when he wants to go somewhere. That would be fine and dandy if he had all his strength and balance. He definitely can walk, but he is very unsteady on his feet and needs someone by his side at all times. Technically we're not supposed to let him walk without a therapist because we haven't been trained to assist him yet, but we are allowed to help him transfer between his chair and the bed, and if the chair happens to be across the room, well, I'm not going to carry him... ;-)

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.

Friday, March 13, 2009

Dear Neil…..Love, Dad

Lori has done such a great job with this blog. I have mentioned to her a few times that I would write it occasionally but have yet to follow through. Tonight is the night. I’m not near the writer Lori is, but here goes:

First of all, a quick update on today: Neil’s walking continues to improve as does his ability to get up out of his chair or bed. He’s still working hard to get beyond the whispering of some words and is so earnest in his efforts in all that he attempts. It’s very humbling to be by his side. I know he feels our unwavering support and love.

Neil loves having sleepovers so I am spending tonight in his room. They have a chair in each room here that pulls out to make a bed and Kessler doesn’t mind if a family member stays over once in a while. We have done it a few times since we have been here.

I want to write directly to Neil tonight.

Dear Neil:

Your accident was exactly seven weeks ago today. Not a day (hour) has gone by where I don’t wish we could go back and re-write the script. I wake up every night in the middle of the night and hope it was just a bad dream only to be slapped hard with a dose of reality.

I would like with all my heart to tell you why this happened Neil. I pray that one day it will make a little more sense to all of us.

I am so proud of you Neil and feel so blessed to be your dad. School comes easy to some but you had to really work at it and your effort was paid off with getting accepted to BYU-ID. You never speak badly of others, your kind heart is manifest in so many ways, and you always forgive others so quickly. You have grown into being such a fine young man.

I would trade places with you right now if I could but as that is not possible the best I can do is to be by your side and that is what I (we) will do without fail. Your mom and I will be here for you every step of the way. We have a tough journey ahead but the key word Neil is “we”—together. That’s what being a family is all about and is something you never need to worry about.

I love you Neil. I feel so blessed to be able to be your Dad. You are a wonderful son.


Thursday, March 12, 2009

Ooh Baby, Baby

Fred is Neil's very patient speech therapist. He comes in each day to work on communication and cognitive skills. He brings flash cards and every-day objects. Sometimes he uses things he sees in our room. He comes prepared with ideas, but is able to change his planned activities to work with whatever will catch Neil's attention. Obviously Fred's focus as of late is trying to help him speak. He's been gradually successful in getting Neil to mouth words. Every day he tries to say more words, and the whisper sounds are getting a little breathier with slightly more volume. Of course the goal is to have the sounds come from his throat and it's heartbreaking to see Neil try so hard and not be able to. Fred has Neil put his hand to his throat to feel the vibrations, and Neil will shake his own throat with his hand to try to make the same sounds. Today, gentle Fred got a little more aggressive. He pushed on Neil's diaphragm as Neil whispered the word "baby" and we got sound! It was a one-time deal, but sure gave us hope for more of the same. As it is right now, he tries to talk and we listen and listen, but it's so difficult to figure out what he is saying.

One of the negative sides of Neil's increasing understanding is his recognition of his decreased abilities. So fending off feelings of helplessness becomes another obstacle for this already challenged boy. If he can figure out how to talk again, it will certainly go a long way in making him feel like the young man he is.

Wednesday, March 11, 2009

Leaps and Bounds

Neil's rehab team meets every Wednesday to discuss his progress and plan for any changes to his program. The outcome today was that everyone is very pleased. Dr. Galang used the term "leaps and bounds" to describe the speed at which Neil has advanced, but reminded us that this is still a long road we're on. The biggest concerns for Neil right now are his ability to speak and to use his left arm. Down the road our concerns ...well, we'll just wait and see what we have to be concerned about then. At present, we'll just leap and bound along with Neil!

Walking continues to be a progressive skill for him. Neil only needs one assistant now, to help with balance. Although he still struggles a little with his left foot, he can use it so much better than before. They've even had him walking up a few steps with some help. Looks like we won't be needing to renovate the house for wheelchair access when he comes home :-) Maybe they'll work on his snowboarding skills next.

Tuesday, March 10, 2009


Actually, despite the title of this post, Neil is calming down. His perseveration ticks are much more under control, and he seems to be having an easier time paying attention to his therapists and to us. Of course everyone is pleased because he's getting more out of each therapy session.

His doctor has now prescribed a new treatment for Neil involving median nerve stimulation. For several hours of the day, he has wires attached to the inside of his lower arms that send electrical pulses up the median nerve. This supposedly stimulates his brain. The therapists aren't necessarily convinced this will do anything for Neil, but it's not going to hurt. If there's a chance this will help give Neil the use of his left arm, or do anything to jump start those damaged areas, I'm all for it. We'll see...

I guess I haven't mentioned for a while some of the new things Neil is doing now. He can eat by himself (but we sometimes help, just so he can get to his therapy on time--he's a little slow), he can brush his teeth, he can reach down and pick things up off the floor, he can get himself up into a sitting position (Okay, maybe a little help is needed), he can spit (Amazing what we take for granted, huh?), and he can drink water from a straw, a cup, and a bottle. We're finding out that he's needing a little bit of help recognizing letters, but he gets them right most of the time. Communication still involves pointing, thumbs up and down, head shaking, and occasional mouthed words. Wish I could read his mind. One thing I'm sure of though, he knows we love him. That kind of communication you just feel.

Monday, March 9, 2009

A New Set of Wheels

Neil has graduated to a different chair. His original one was very supportive with a head rest and the ability to recline. This new one is a very pared down, basic chair with big wheels on the sides that he can control. Because the chair is much simpler, it represents Neil's progress. He doesn't need all the support anymore, and he can be trusted to transport himself. However, there are a few problems with his new vehicle. First off, Neil misses the headrest. Although his neck muscles are getting stronger, he's used to leaning back when he gets tired, so now he'll have to work a little bit harder. Second, since Neil only has one usable hand at present, he tends to move in circles. Please don't snicker at the image you have of him in your head right now! This is going to be a tough job for him to learn to manipulate this thing without getting too frustrated and worn out. And lastly, this chair better be temporary, because it's much too small for our 6' 1" Neil. His knees are almost up to his shoulders in this chair! Okay, I'm exaggerating a bit, but you get the idea. Maybe it's all part of their plan to motivate him to get out of the chair and walk!

Sunday, March 8, 2009

More Than Words Can Say

It was a nice day outside, and a nice day inside here at Kessler. With Neil's increasing ability to pay attention we were able to play some games that he enjoyed and take some walks outside. He loved shooting the Nerf gun at targets I drew on the window of his room. Communication has improved a lot, as well. He sometimes tries to mouth words, but mostly he points or snaps his fingers. If we ask the right yes or no questions we can sometimes work out what he wants. When Dr. Galang came by today, I told him it was a little frustrating trying to understand Neil. He told me not to worry because Neil was frustrated too, so he’d eventually figure it out. Good motivation to learn to speak, huh?

Our family had a poignant experience tonight. In our church, it's the young men who have the responsibility to prepare, and pass the Sacrament to the congregation. With permission, we had our own private service in Neil's room. Without being prompted, he removed the white cloth from the tray and broke the bread while we played a hymn on the iPod. He was fully engaged in the process and we were all deeply moved by his reverence and understanding. I am ever grateful for how much of Neil we have, and hopeful for what he will regain.

Saturday, March 7, 2009

Just Me and My Dad

Sorry it's a late post tonight. Scott was with Neil alone for most of the day, giving me a little brake to nurse a cold and catch up on some groceries and house work. I'm taking tonight's shift. Since my time with Neil today was relatively short before he fell asleep, I'll tell you what Scott shared with me. Neil's periods of focus and attention where a little longer than usual today. They took a few walks together, played some games, and talked (obviously a one-sided conversation, but those can still be meaningful.) Because Neil showed signs of understanding most of what Scott was saying, he felt it was time to share Neil's own story with him. We have been telling Neil for weeks that he had a car accident and is in a hospital getting better. This time, Scott filled in the details. And Neil listened to every word. They had a really good day together, and by the time I came with dinner, Neil was showing a great deal of affection for his dad. This isn't the circumstance I would have chosen to help strengthen the bonds of father and son, but I count it as another one of those sweet blessings we've been given along with the challenges.

Friday, March 6, 2009

Can We Talk?

I never realized how hard it was to make words before. This is the process we've been watching slowly unfold: First, you have to want to communicate something; second, you must be able to move your facial muscles; third, you need to be able to control said muscles; fourth, you have to know what word you want to use to communicate your original thought; and then you must make your mouth muscles form the word that represents the thing you're trying to say. And that's as far as we've gotten so far. I know, I know...he still needs to add the sound so we can hear the word. Actually, it was very exciting to see Neil mouth the word "cup" with his speech therapist today. That was another first for him. Sound will come eventually. After watching this process develop over weeks, we're understanding how much is actually involved in the whole communication thing. Even when he is able to make sounds consistently, it will most likely be a long while before they actually sound like his voice again. In the mean time, we like to call his cell phone just to hear his voice mail recording.

Thursday, March 5, 2009

Pillow Fight

Neil is progressing just fine. He gets a little stronger each day, which makes sitting and walking easier. (Remember though, he walks with two therapists holding him up on each side, moving his left leg for him.) He continues to show he can follow directions and understand. He can put his food up to his mouth, and has even scooped up some bites by himself. Even his facial muscles are beginning to show signs of control and movement. But his inattentiveness remains a problem. The successes come after much work at focusing on the question or task at hand. Still, we are so pleased at how far he has come, and I can't tell you how rewarding it is to see little glimpses of his personality come through. For instance, his therapist had him laying on a mat so he could move freely, exercise some muscles, and get his wiggles out. While she turned her head to consult with some of the medical staff, Neil picked up a pillow and threw it at her! Yes, this therapist happens to be female, young, and cute. I'm not at all surprised that he would be flirting :-)

Wednesday, March 4, 2009


It's been a good day, and a day for patience. We've been waiting for Neil to show some affection, and he certainly does. He frequently reaches up to pat Scott or me on the back. Often he pulls us in close for a hug. Today Scott asked him for a kiss and leaned his cheek close to Neil's face. Sure enough, Neil's lips made a kissing sound. Of course we made sure we each got another kiss or two during the day! His sweet and tender ways help us to cope with another aspect of his condition--his repetitive ticks. This habit is called perseveration, and is fairly common in patients with a brain injury. Pretty sure it will go away as he progresses.

His therapists that have the patience and perseverance to deal with his short attention span have been rewarded with seeing his ever-expanding cognitive abilities. He knows what things are and what they're used for. He knows about his family (although he seems to think he has a dog instead of a cat!), and that he's a high school student. He knows he's in a hospital to help him get better. He seems to know and remember a lot. When he starts talking, we'll have a much better idea how much more he knows. The talking is coming along a bit slowly, but we were warned that might be the case by Dr. Danish, the neuro surgeon who performed his craniectomy.

Besides the kisses, today's highlight was our walks outside. We bundled Neil up and took him out to throw snowballs. We knew he enjoyed it because, as we came back in the building through a back door, we asked him to point the way we should go to get back to his room. He directed us correctly until we got to the elevator to go up. Instead of having us get on, he directed us out the front door again!

P.S. When you come for a visit, ask Neil to snap his fingers for you. It's his latest trick!

Tuesday, March 3, 2009

A Wake Up Call

I would so like to know what's going on in Neil's head. Dr. Galang, who is in charge of Neil's rehabilitation, says that Neil is fully awake now, but it's kind of hard to tell. Here's why--his span of attention remains very short, he constantly fidgets, he doesn't talk yet, he is still somewhat inconsistent with his responses, and he doesn't seem to realize he has a left field of vision...or a left side to his body, even. This is all part of the process. As he emerges from the minimally conscious stage, he enters what is known as the confused/agitated stage, so a lot of his inability to focus is to be expected. I worry that his fidgetiness is getting in the way of his therapy, but his doctor remains optimistic.

Neil has moments between his wiggles and inattention where we are realizing he understands a lot more than we thought. He remembers that he is the snowboarder in the family, and that Mom and Dad are skiers. If we're patient with him during meals, he will shake his head or give a thumbs up to show his food preferences. He points to things and sometimes pulls my hand in a certain direction, and I wrack my brain to try to figure out what he wants.

That must be why he is agitated and confused. He wants to communicate...and so do we.

Monday, March 2, 2009

New Therapy and a Big Thumbs Up

Neil's been having physical therapy, occupational therapy, cognitive therapy, speech therapy, and some occasional pet therapy. Today he had some music therapy. They took him into a small darkened room with a cool-looking lava lamp type thing and colors projected on the ceiling. Then they played some of his favorite music from our borrowed iPod. I think they had him throwing balls at the colors, and a few other low-stress activities. The best thing to come out of the session was his use of thumbs up and down.

A bit of background: although Neil is understanding quite a surprising number of things, he has been having trouble communicating yes or no. He hasn't been able to comprehend the meaning of, "if you want this, then give me a high five," or "if you don't want any more, then shake your head." He will give you a high five if he sees your hand up, no matter what you ask for. If you hold out two objects to choose from, he will undoubtedly choose the one on the right side. We have been trying "thumbs up for yes" since he was just opening his eyes in the ICU, but the concept seemed to elude him. We recently started to have a few inconsistent thumbs up responses, but I was surprised when the therapists said he was giving both thumbs up and thumbs down at appropriate times. I left for home this afternoon, shortly after his music therapy, but Scott confirmed that he showed adamant preferences for food at dinner tonight by using the afore mentioned digit. This is big folks--a huge breakthrough in communication!

Sunday, March 1, 2009

A Leg Up--Part 2

Looks like we have another working leg! Today, Neil was able to lift his left leg a little when his dad asked him to. It seems to take him a few seconds to remember how to do it, and sometimes he can't seem to get it, but this is how his right leg started, so we're expecting great things to follow this new accomplishment.

Scott is getting good at lifting Neil back and forth between his bed and his chair--something I have to get the aides to do. When Scott is here, he likes to hold Neil up in a standing position for a short time before putting him down--just to get some strength in those legs. It's a heart-warming thing to see him standing tall again, if only for a few seconds. It's been a long time.

Although we haven't seen the spontaneous smile again, we feel like it will be showing itself again soon. Neil seems to be finding other ways to make his feelings known besides words and facial expressions. He gives occasional hugs without being asked, and will sometimes lift Mom or Dad's hand to his cheek, presumably for us to stroke it. But he'll also push us away if we're infringing on his space. And of course, Alison already mentioned his way of letting me know he's had enough reading for now :-)