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.

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.

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 :-)

Kisses

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!

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.

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!

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 :-)