Formerly "Neil Stone Updates"

Thursday, April 30, 2009

Getting Better

Neil woke up this morning with his right eye swollen shut. No worries--just a little residual fluid from the surgery. I'm guessing he'll have an awesome shiner soon. Knowing I was going to mention his eye in the blog tonight, Neil asked me to also note that the swelling went down a little during the day so that he could open his eye half-way by this evening.

He was a bit sleepy today--still recuperating I think. He'll be ready to get back in the therapy saddle soon. We have to get official approval from the doctor before he can go to his out-patient rehab again.

Here are the pills Neil takes each day. Quite a reduction from what he had been taking before we left Kessler. The huge pills on the top row are nutraceuticals left over from the study Neil was involved in while he was there. We're not really sure about their efficacy, but they certainly can't hurt, so we'll use them until they're gone. You should see him take those horse pills. He's quite a trooper.

Wednesday, April 29, 2009

Home For Good

The doctor was pleased as punch with his handiwork and you can see why. Look at the lovely shape of that noggin!

Getting home ended up taking a little longer than we'd expected. Just got back from the hospital around 10:30 PM. Neil has a bit of a problem with orthostatic hypotension and lying around in bed for two days didn't help matters. After a physical therapy check, waiting for doctors, BP testing, and extra fluids, we finally got the okay to leave. Neil should sleep well tonight. It was a pretty exhausting experience for him (and us).

Tuesday, April 28, 2009

All the King's Horses and Dr. Danish

Surgery was a success--Neil is back in one piece. He's been thirsty since the recovery room, and very groggy. It's been a strange experience to see him attached to all the tubes and monitors again, but this time he's aware of his surroundings and wants to know what everything is for. He'll be here at RWJ through the night and then back home tomorrow.

I'd almost forgotten how terrific Neil looks with a symmetrical head. Even though it's bandage-covered, it's nice and round. We're so happy to be able to save the helmet for it's original purpose only. Neil's aim is to be ready to use it for snowboarding next season--some good motivation for working hard at therapy and healing!

Monday, April 27, 2009

Prayers Requested

Off to get some good sleep before tomorrow's surgery. We're all a little nervous, but glad to finally see Neil's skull made whole again. Your prayers and good wishes have sustained us through so much already. I know they will help us tomorrow as well. In return, we offer our thanks and our love.

Sunday, April 26, 2009

Sunny Sunday

It was Neil's first time back at church today and I was busting my buttons. He looked great in his shirt and tie, so the helmet only made him feel a little bit awkward. Everyone was so kind and were genuinely happy to see him back. Neil seemed pleased to be doing normal, familiar things again and I was glad to see he was alert and focused enough that this turned out to be a positive experience.Scott's sister Shelly is here for a week to help out. We always love it when she comes, but circumstances around her visit this time are much happier than they were when she rushed here in January two days after the accident.
One more trip to Robert Wood Johnson for lab work was necessary today, so we ran over for a quick test. After Neil braved the needle again, we shyly peeked into the ICU to see if we could catch the eye of any of our familiar nurses. We hadn't been there since February 18th, so we weren't sure that any one would recognize us, but they rushed up to see us when we came in! I think Neil was surprised at all the attention, but when we explained to him how much these people meant to us and what they did for him, he simply said, "thank you."
We want to add our "thank you" too, to all the nurses (even those we didn't get to see today) for giving so much to Neil's recovery and our comfort. And "thank you" to our church friends who welcomed Neil back with so much love.

Saturday, April 25, 2009

Sticky Brain

I picture Neil's brain to be like walls and walls covered with adhesive. The events and experiences that happen throughout his life are little notes that attach to these walls and stay there for him to recall and review. Since awakening from his comatose state, his current memory walls have very little adhesive. Things may stick briefly before they fly away, or not at all. We've been hoping and praying for stronger glue to hold onto the moments, the people, the feelings he encounters.

As I woke Neil up this morning, I quizzed him on upcoming events for the day and things that had happened yesterday and found that everything stuck! He remembered that Aunt Shelly was coming. He remembered visiting with Mike and texting Justin yesterday. He even remembered what he and Justin were texting about. It would have been wonderful if he could have continued throughout the day with his new memory skills, but the glue began to give out and the notes had trouble sticking again.

Those little moments of clarity are a thrill and give us hope for more. His short-term memory is improving gradually and we're looking forward to more experiences for him to remember.

Here's Neil finding a way to make his left side participate in a posed smile. Looks pretty authentic. It won't be long until this smile is real.

Disclaimer: I didn't take the lovely photo of the horse farm a few days ago, but I did spend a good hour on the Internet finding that picture of the exact farm that we passed on the way to therapy.

Friday, April 24, 2009

Wii Therapy

Neil's PT back at Kessler 1 actually recommended Wii Fit to supplement his therapy at home. We had some fun today heading soccer balls and trying to figure out how to execute a proper ski jump. Because the game wasn't designed for brain injured individuals Neil needs a little assistance, but I think it will be a great addition to our home repertoire of activities. Do you think our insurance will let us submit the purchase for reimbursement? ;-)

Thursday, April 23, 2009

Pleasant Driving

More pleasant than freeway driving
(web image)

We liked the drive to Neil's new outpatient rehab on Pleasant Hill Road in Chester today. (Wait a minute...the West Orange facility was on Pleasant Valley Way. ...I'm sensing a trend here.) The weather was lovely and so was the scenery along the way. It was a familiar route to us, as Neil used to visit a friend who lived just next door to this Kessler facility before she moved. His therapists were professional and kind. Today's visit was for evaluation, so there wasn't any real exercise involved which is fortunate because Neil was very sleepy. Brain injured patients are always battling fatigue, but today I think we was a little under the weather. Anyway, we've got the weekend to get some extra sleep, then one more day of therapy on Monday before the big surgery on Tuesday.

Wednesday, April 22, 2009

Going Back

When Dr. Danish last saw him before we left Robert Wood Johnson Hospital, he wasn't terribly hopeful for Neil's future. Well, he didn't really say that to us, but we could tell by his reaction to Neil's progress today that that must have been the case. He was very impressed that three months out from the accident, Neil was already walking and talking. The good doctor wanted to do the cranioplasty surgery before he left on a trip, so he fast tracked all the lab work and the CT scan for us so that we could be all ready for Tuesday's operation. Because of the testing today that we weren't expecting, we had to postpone Neil's first therapies until tomorrow.

Since the doctor works out of Robert Wood Johnson, that's where we went for the testing. I wasn't prepared for the wave of emotion that I felt as we walked into the atrium that we had spent so much time in back in January and February. I can't quite tell you what that emotion was...maybe I was reliving the uncertainty, the grief and fear we felt so strongly then. We still have those feelings, though there is much relief and thankfulness for what we've already gained back.

As we move forward from here, we are all going to need a lot of patience. While Neil learns to be more independent, he will need patience with himself and his limitations, and patience with us as we try to fill his needs as well as our other responsibilities. We will need that patience as we try to deal with his short-term memory and his persistent, repetitive questions. I'm glad he's asking questions, though. It means he wants to know; he wants to fill in the holes in his memory; he wants to make sense of his new world. And that's a good sign.

Tuesday, April 21, 2009

There's No Place Like Home

It was so nice to be home today and have Neil here with me. For his physical therapy we did a little Wii Fit. For speech and language therapy we played some word games. Neil helped me with dinner by stirring the sauce and mashing some potatoes. He helped Scott in the yard by picking up sticks. How's that for some useful occupational therapy? We're looking for those things you can do with one working hand. I think he liked feeling helpful and part of the family. By the time he went to bed tonight, he was exhausted but content, I think. (As were we all!)

Tomorrow morning we visit the neurosurgeon to see about getting his skull pieced back together. He's looking forward to not wearing his helmet, so we hope that surgery is soon.

In the afternoon he begins his real outpatient therapy with a three hour session at the Kessler facility in Chester. It's just a little bit closer than West Orange, and a less stressful drive as long as it's not rush hour. He will be going three days a week.

Big day tomorrow. I'd better get to bed myself!

Monday, April 20, 2009

Family Dinner

First time in three months we could all (minus Alison) sit around the family table together for a meal. Made me a little weepy. Funny how such a simple thing can mean so much. We had to forgo the planned steak BBQ because of a rain storm, so ended up with a simple spaghetti dinner. Nobody seemed to mind. It felt like just a regular meal used to feel before all this happened, which is just what we needed. Don't worry--those steaks aren't going to be wasted! We'll be having that BBQ as soon as the weather cooperates.

Neil's trip home was marred slightly by an upset stomach. It was tough to see him under the weather on such an otherwise happy day, but he still enjoyed showing off his new speaking skills for his speech therapist and his doctor before we left. He got the thrilled responses we had expected.

Because he wasn't feeling well, Neil rested and napped a bit, but we did spend some time going through the large basket of get-well wishes we have received since his accident. The stack is pretty big, so we've only gotten through about 2/3 of the pile, but Neil was fascinated by the outpouring of love and prayers from so many people. I've shared many of these cards and letters with him previously, but with his memory issues, it was like the first time he's heard them. He liked identifying the names of kids from school and work that he knew, but enjoyed (and marveled) at the messages from people he didn't know--associates of Scott's from work, neighbors we haven't met yet, and friends from Scott's and my childhoods. There are even a couple of anonymous notes. I asked Neil if he felt like a celebrity and he said he did.

I was glad he felt appreciated because it kind of made up for the fact that the therapy cat didn't play her part as rehearsed. After giving him a few sniffs, she jumped on his lap and licked his hand. We were thrilled at the initial reception. But she snubbed him for the rest of the day. It may have been because she didn't recognize his voice. He called to her like he used to, but his voice isn't Neil's voice yet. We reminded him that she is, after all, a cat. And cats are not like dogs. She will surely be snuggling with him soon, but it has to be when she's ready. She just better be ready tomorrow!

Sunday, April 19, 2009

Getting In the Last Word

Scott reporting tonight: While Neil was eating his lunch today, I was going through the Sunday comics--helping him to try and read some, and reading others to him. We have been doing that the past few weeks. While I was turning pages, I heard Neil starting to talk and first thought I was delusional. I looked and asked Neil, "What was that?" He replied, "I don't know." I exclaimed, "It's your voice, you are talking!" Neil replied, "I am?" And so went the conversation for the next 10 minutes--both of us in states of simultaneous disbelief and euphoria. It just happened, out of the blue, and what a thrill it was. Neil started calling relatives so they could hear, also. It was a real voice--not a whisper and not the gravely, deep voice Neil could sometimes muster to help him communicate. This was a relatively effortless voice--easy to understand and melodic to our ears. At one point, he asked me "what if I forget how to speak like I am now, what do I do?" I didn't have a good answer for that but assured him that wouldn't happen (insert prayers here). As of tonight, capability is intact. The voice doesn't resemble pre-accident-Neil's very much but it was detectable in some words more than others. Needless to say, we are so excited. This will give Neil and his speech therapist a lot to build on from here and will give us all a break from straining to hear his whispering.

Heading home tomorrow! Lots to get ready and it's getting late. We'll give the trip report in tomorrow's entry.

Saturday, April 18, 2009

The Daily Grind

We have said our goodbyes to this schedule. Oh, we'll still have a daily schedule. There's plenty of therapy ahead of us--much of which we'll be doing ourselves. But this one is over. Sunday is all ours for packing up and saying farewell.

Dont' be fooled by the "Rest/Free Time." Neil was always very tired after this therapies, but unable to actually nap because of some of his meds. So while he got off his feet for a little while, we would usually work on memory skills, cognitive games, or writing. Often we'd take a walk when he felt rested, or just talk. It's been awesome to see his ability to understand and carry on a conversation improve over a relatively short time.

Our best talking times have been in the evenings, before bed. Maybe it's because the responsibilities of the day are over, or some of his medications have worn off--I'm not sure---but he becomes so thoughtful and open. We delight in his insightful, yet simple, comments and questions. It's the real Neil coming out and gives us so much hope for what his future holds.

Friday, April 17, 2009

Field Trip Foiled

We've been waiting for Neil's turn. Every so often the rec. department plans a fun trip for a few chosen patients. We've seen the lucky ones go bowling, to the zoo, and to the airport to practice boarding a plane. Neil's chance finally came and yesterday I was informed he was invited to attend this exciting event. What? Doesn't everyone want to go to the Abilities Expo in Edison? Even though we don't need a souped up wheelchair or a van with a lift, at least Neil would get a chance to leave Kessler for a little while and besides, we could use a shower chair until he gets a little more stable. So we looked forward to today's outing.

What we were told would be a thirty minute drive to get there, ended up taking over an hour because the van driver had faulty directions. By the time we arrived, everyone's noon meds were due to be taken, so we had to register quickly and make our way through the center to the back to eat lunch, etc. As I've mentioned before, eating takes a little while, so we were anxious and ready to pick up our freebies and shop for our chair by the time lunch was over. We had no sooner walked to our first booth to admire the lovely bathroom amenities when I got a call from our favorite rec. therapist that one of the patients on the trip was ill and we'd need to meet back at the front of the expo center to board the van back to Kessler in fifteen minutes. Bummer. It could have been fun, but we'll never know. It was a good place to go for Neil's first real outing, brief though it was. I realize a tall young man wearing a snowboarding helmet covered in stickers in the middle of spring is going to get a few stares. But at this particular event, the looks he and I got said, "I get it. My heart goes out to you. Good luck and God bless."
Here's Neil later in the day with animals he's received from special friends. We're starting to pack things up for the trip home on Monday, so we had to get one last shot with them here.

Thursday, April 16, 2009

Mr. Nice Guy

Every brain injury is different, but there are usually certain phases that are common. For instance, patients often go through a period of confusion where they can be aggressive, rude, and inappropriate. Neil certainly gets confused, but I've never seen him more polite. He tells the nurse, "thank you," as she gives him a whole slew of humongous pills to swallow. When his speech therapist asks him questions about school and family to get him talking, he turns the questions around and asks about what she studied in school. He's very cooperative with all his therapists. One of them, on returning from a week-long vacation, told her colleagues the only patient she couldn't wait to get back to was Neil.

Neil's kind and thoughtful nature has made it easy for us to care for him (even though the time and distance involved is really tough.) He's a delight to be around. Apparently, this is a problem for us because, we've been doing too much for him. One of our goals right now is for him to be independent. I was surprised the other day when his occupational therapist told me how well he could put on his own shoes and socks. Oops! Guess I don't need to be kneeling on the floor doing that for him anymore. It's hard to stand back and watch him struggle with opening his milk carton, but if that's what we need to do to help him heal, we're on board. Maybe it would be a little easier for us to hold back if we taught him to bite and swear a bit... Don't worry, looks like Neil can only be Neil--thank goodness!

Wednesday, April 15, 2009

Little Signs

Until very recently, Neil couldn't get through a meal without needing to stand up every few minutes. I think he got restless, lost focus, or just wanted to stretch his legs. Whatever the reason, mealtime could stretch out to over an hour and his food was always cold. It just doesn't happen any more. Yes, he does still take small bites and sips of his drink, so he eats slowly, but he has no trouble sitting through his entire dinner.

Tonight Neil was invited to have "dinner with an administrator" at Kessler, and Scott accompanied him. It was a chance for a few of the patients to share their feelings about the Kessler experience with administrators who wanted some feedback. Scott tells me it was very nice, but long, yet Neil sat through the whole thing and did very well. It's funny, but you don't usually think of mealtime as a milestone indicator for progress. If it is, we've come a long way.

Tuesday, April 14, 2009


I can't get over how hard Neil works. Here he is playing a game to strengthen his weaker left leg. We put his basketball on the top of his tent bed and he had to use his left leg to kick it off in different directions. The smile is posed. He was actually concentrating on the task and practicing over and over again. I got tired of shagging the balls for him, but he wanted to keep trying. Even though I told him he could use his right leg occasionally for a break, he continued using his left.

When Scott or I work with him on cognitive skills like math problems or comprehension, he says, "More questions." He wants to get better and he's doing his best. His determination is paying off. His doctor told us Neil's progress has been "phenomenal."

But today, the psychologist here at Kessler sat down with me and I got a dose of reality as she talked about some of the hurdles Neil has in front of him as he continues his recovery at home. There's a lot of work ahead for all of us. So we'll take our cue from Neil and forge ahead with determination and hard work.

Monday, April 13, 2009

More Tomorrow

It's just too late tonight, and I'm just too tired to write, but here's an awesome picture to enjoy. We had a good day today. We'll have another one tomorrow, I'm sure.

Sunday, April 12, 2009

Happy Easter

It was a nice quiet Easter at Kessler. Eric was visiting cousins in Arizona for spring break so Scott, Neil, and I spent the day together. After a morning visit from Glen, Neil had a little Easter egg hunt around his room (not unlike one of his OT activities). He got a few hats in his Easter basket (anticipating several weeks of baldness with a really wicked scar after his bone flap replacement surgery). Then we all enjoyed a lovely dinner prepared by yours truly the day before in anticipation of this day. Thanks to a dear friend, we watched an inspiring video about the Savior's life with some beautiful photography. After Scott left for the airport to pick Eric up, Neil and I napped, did a little cognitive practice, then read some scriptures together. Scott brought Eric back to the hospital directly from the airport so we could have a little reunion and a family prayer. We have so much to be thankful for. It was a different kind of Easter for us, but somehow, it felt very appropriate.

Saturday, April 11, 2009


It used to be kind of sad for us when the recreation therapy department at Kessler passed around their weekly calendar of events. Despite their claims to the contrary, none of the activities were appropriate for Neil. I remember taking him to a comedy show one day, and leaving after about 5 minutes. He didn't look in the direction of the actors and had no idea they were even performing.

Things are very different now. Just recently Neil and I got to play some tennis on the big screen TV on Wii Wednesday. A couple of days ago we had some fun with some borrowed games and a DVD from the recreation office. I've already mentioned the concert the other day, yoga class, and the air hockey table we use constantly. Today, Scott and Neil dyed Easter eggs. We have now become very good friends with Mary and Katie, the rec therapists who sponsor all these activities. They also coordinate many of the therapy dog visits and the cooking workshops. (Last week Neil made a delicious turkey and Swiss sandwich.) He's sure come a long way.

When Neil comes home, he will be getting outpatient therapy three days a week, but I'm going to end up being his recreation therapist. I'm looking forward to the job. I think I'll pick up some more Wii games and bone up on my yoga. We've already got a therapy cat. This is going to be fun!

Friday, April 10, 2009

Where's Jemima?

Fred, our speech guy, is getting Neil ready for the trip home. He's been having him practicing a few new phrases with his "deep" voice. First he has Neil get a big breath, then he helps push his diaphragm while Neil says, in a low voice, "help me, Mom!" It doesn't sound like Neil's voice, but it is much louder than his whisper. It's kind of scary because he really sounds like he's in trouble! I'm hoping he won't need to use that one. Other getting-ready-for-home phrases are: "What's for dinner?" and "Where's Jemima."

Jemima is the family cat who prefers Neil to any one else. As fond as Neil is of Sherman, he wouldn't even consider trading Jemima in for a dog. I do believe she misses him as much as he misses her.

A few weeks ago, Neil's sweet and talented friend Janna brought this beautiful painting of his beloved cat. I must say, it's a perfect likeness. Janna was home from school and spent her spring break painting it for him. When Neil first saw it, he reached out to stroke Jemima. Thank you, Janna, for the wonderful addition to Neil's room decor. We like having it at Kessler, but it's going to look great in Neil's room at home--right beside Jemima herself.

Thursday, April 9, 2009

46 pick

Neil is enjoying being able to reach out to friends through texting. His eyesight makes it hard to read what comes in, so he has me read them for him (better not write anything too personal). He's been trying to send on his own. Sometimes he asks for my help and I try to get him into "word" mode so that most of what he writes makes sense. Other times he pushes the send button before I can check it. If you got a message saying "46 pick", he was trying to say "I'm sick" (try it in word mode sometime).

Is Neil really sick? I don't think so. I think he's trying to make sense of why he's in the hospital and what exactly is going on. We have explained about his accident many times, and he understands when we tell him, but his memory issues make it hard for him to remember. He does get occasional headaches and he gets pretty tired by the afternoon, but he usually admits that he feels good.
This is Neil chillin' after a hard day of therapy. You can see the side of his head where part of his skull has been removed. It will be replaced after we leave Kessler. His phone is in his hand and he's busy texting his cryptic message: 46 pick. That's okay. He's getting better and he'll be home soon.

Wednesday, April 8, 2009

April 20

We have a date! Yes, Neil is coming home--and not a moment too soon. This morning he was asking me how far our home is from Kessler. I told him it takes about 45 minutes to get there. He said, "Let's go!" I'm so happy we could finally write on his calendar this afternoon the day we actually can get in the car and go. We still have lots of out patient therapy ahead, but I'm hoping that being in a familiar environment will help him get a handle on some of his confusion about time and place.
We so appreciate those who have been able to come and visit. Sometimes Neil may seem a little distracted or tired, but we frequently look at the door poster with the visitor tags and talk about who has come. It's a good exercise for his memory. It's not too late to come by. We have eleven days left!

Tuesday, April 7, 2009


This is Neil with his first occupational therapist, Christie. She recently rotated to the first floor therapy gym. She was replaced by Theresa. Neil now has Kirk (Sherman's handler!) as his physical therapist. He took Erin's place when she moved to the second floor. Rena, Fred, and Meghan have been his speech therapists at various times. Mary is the recreational therapist. Kristen, Heather, Rich, and Jodi have filled in on occasion, and I'm sure there have been others--we just can't remember them. They can work Neil pretty hard, but he likes them and does his best. We are glad to have such dedicated, kind individuals helping him out everyday.

Another positive day for Neil. Some good moments of clarity in understanding and conversation, a few lapses, but over all we see improvement and progress.

Monday, April 6, 2009

Easy Rider

Neil on Glen's Harley last Sunday.

Every day as we walk down the hall to therapy, the nurses, aides, and therapists all comment on how good Neil looks and how well he is doing. We are thrilled with his progress and hope to be bringing him home within a couple of weeks.

This is some of what Neil is still working on, and will be for some time:
Vision—His right eye is still affected by third nerve palsy, and both eyes are struggling to work together.
Left hand—The left arm is able to move more, and we're waiting for his fingers to wiggle. He daily wears different splints to keep the tendons in his hand and arm from tightening up.
Attention span/focus—It’s getting better, but it’s still short.
Short-term memory—It can change from one minute to the next, but we work on it every day.
Left side inattention/neglect—His brain struggles to recognize things on the left side. It affects his vision, his left arm and leg. He doesn’t always see things that are on the left, so he sometimes just guesses what words are by looking at the last few letters.
Speech—His whispers are quite articulate now. He can intone very low rumbles with occasional words.
Emotion—A friend told a legitimately funny joke last night and Neil broke out into a grin. It was awesome—the grin, not the joke. :-) Hope we can get some more of that.

Here’s a little of what Neil’s got going for him:
He’s getting great care.
He’s young and healthy.
He can walk.
He can communicate and has a good grasp on language.
His long-term memory is intact.
He’s polite so everyone here likes him.
He has supportive family and friends.
He wants to get better.
He has faith in the power of prayer.

I think the scale weighs pretty heavily in his favor. Don’t you?

Sunday, April 5, 2009

Another Letter

Dear Rich Products Corporation,

I want to thank you for my husband for these past several weeks. Neil’s accident has changed our lives dramatically in so many ways. I don’t know how our family could have managed so far without having Scott available to us each day to help care for Neil and still try to keep some semblance of normalcy for our son Eric. I’m grateful that Scott works for such an understanding and compassionate company that would allow him the time to be where he was needed most—with his family.

He’s going back to you tomorrow somewhat torn. He’s ready to get back to work—he finds great satisfaction in what he does at Mother’s Kitchen—but his heart is going to be with Neil. Although we still have a long way to go on Neil's journey of healing, I know Scott's the kind of man who will carry out his responsibilities to both you and our family.

With humility and gratitude,

Lori Stone

Saturday, April 4, 2009

I've Got No Strings to Hold Me Down

Actually, that should read "He's got no wheels to hold him up." Neil went all day today without using his wheelchair even once. And he walked. All over the building. Even up the stairs. Boy was he tired tonight! He's still a little tipsy so he always has one of us by his side, but it's mostly for just-in-case. He's really getting strong.

Here's another sign of progress. Kessler was graced with a concert by the Essex County Youth Chamber Orchestra (I may have made that name up, but it was something close to it). Neil was able to sit through, and enjoy, most of the program--maybe forty-five minutes worth. They were very good, and I was so proud of Neil. That is an amazing amount of time for him to focus on anything. He even leaned back in his chair, put his arm across the back of Scott's chair, and crossed one leg over the other--quite a natural look, except for the snowboarding helmet!

Neil would like me to relay the message that he is grateful to those who are reading his blog and are praying for him. He is surprised and humbled to be the subject of so much concern. From Neil's own mouth, "thank you."

Friday, April 3, 2009

Just a Short Note Tonight

Neil played air hockey standing up for about a half hour. Stamina is improving. He did his practiced smile without being reminded when he scored.

We had a poignant discussion tonight about learning to laugh again, and his hopes and plans for the future. Just the fact that he has them says a lot to me about how much of Neil's thinking abilities are still intact. I have great hopes for his future, too.

Thursday, April 2, 2009

Keeping Up the Good Work

Neil walked Sherman outside today. This time he remembered to hold the leash. That represents an increased ability to stay on task! They even played some fetch together. Since the weather was so lovely, he stayed outside a while and shot some hoops. He's getting to be such a strong walker, his doctor advised us not to have him use his wheelchair unless he needs it. Guess he'll be walking to therapy from now on.

After some work today, Neil was able to get some vibrations deep down in his throat. I got to hear a throaty, "hi Mom" that was almost like speech. Very promising for future talking. All in all, a good day.

Wednesday, April 1, 2009

A Day In the Life

Sometimes our posts can get off on a tangent. Today's report will be a recap of what Neil did today without much added commentary.

Dad arrived at 7:45 AM. As is customary, Neil was dressed for the day but back in bed catching some more sleep. (The aides come by about 7 AM and get him dressed.) Dad gave Neil a brief massage to help wake him up and we looked out the window to scout out the weather for the day. Breakfast (in his room) consisted of waffles, scrambled eggs, Cheerios w/ banana, and orange juice. Eating takes a bit of time but we were done in time for Neil to brush his teeth and put on some cologne. Together we studied the calendar prior to PT that starts at 9 AM. In PT Neil first did some stair work by climbing up and down 4 stories with special focus on not favoring his stronger right leg. Then more walking with his therapist as they strolled around the gym. Then it was onto the leg press machine for more left leg strengthening. The last part of PT was spent doing various balancing exercises. All of these activities were interspersed with short rest periods. We headed back to Neil's room where he wanted his phone to text message his friend Sarah. Turns out one of the therapists he worked with today was named Sarah and he wanted to share that with his good friend. With a little help from dad, mission accomplished, and we also sent messages to his sister Alison and his friend Chloe. By this point it was 11 AM and we had a 1/2 hr before speech therapy. We got out some playing cards and spent about 15 minutes in color and number recognition together. Fred came in at 11:30 and continued to work with Neil in getting his vocal chords going and we got some sound at various points of their work. Noon was lunch time-- hamburger deluxe, fries, vegetable soup, an apple and milk. Done just in time to brush teeth before occupational therapy at 1 PM. We decided to walk down to the gym rather than use the chair. OT consisted today of various games- basketball shooting at a short basket, bowling, soccer, etc. mixed in with Q&A between Neil and his therapist. At 2:00 Lori arrived and we all headed back to the room together at 2:30 when OT was done. We played a little more Nerf B-Ball in the room and decided Neil needed a shave. The three of us got that done just in time to welcome three friends of Neil's from his school- Chloe, Rob, and Paige. After the visit, it was shower time. At 5 PM dinner ( pasta and meatballs, broccoli, garlic bread, and soup) commenced and dad left to go home to be with Eric for the evening.

My turn now. I helped Neil through a slow dinner while we chose his menu for Friday and talked about cousins, aunts, and uncles. By this time of day, he was tired and restless and needed to get up several times throughout the meal to stretch his legs and walk around the room. After he ate, Nurse John came in to say goodbye. He's moving to an acute facility for a different kind of nursing experience. We'll miss him. He had great praise for Neil's efforts and told him to keep fighting. At around 6:30 Neil wanted to crawl in bed and try a movie. We got about a half hour of Hancock in before his attention span ran out--much better than the ten minutes we got in last night. So I put his shoes back on and we took a little stroll in his chair around the building. Down in the third floor day room we said hi to Rob and Jim and their moms. They are 21 and 24 respectively--both car accident victims themselves. Down on the first floor we found the aquarium with five fish in it, scoped out the outpatient therapy facilities for future reference, raced through the hallway, and came back upstairs. Time to start getting ready for bed, so Neil brushed his teeth (sitting down tonight, because he was pretty tired) and got into bed. We had a prayer together and read a few scriptures as his eyes started to close. After kisses and "I love you"s I zipped him up in his posey bed for the night. He was still awake when I left at 9:00, but said good night peacefully, knowing that Dad would be back in the morning to start all over again.