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"Closer to Fine"

Since that first stand-up moment two weeks ago, Bob has continued to move forward – literally. The next day, July 7th, with his smiling physical therapist by his side, he took five steps, rested, and repeated the drill four times. He increased that record each day, and by the end of the week was able to do it holding onto a walker instead of grasping bars on each side. We know you can believe that watching him was as meaningful to us as those historic first steps on the moon.

I’m writing this on July 19 – three months since the accident. Bob is now back at the Shady Grove Adventist Rehabilitation Hospital, which means he has graduated from “sub-acute” rehab to “acute” rehab – technical-speak for a more vigorous regime of work he can start doing in physical therapy now that his legs have gained strength. We feel grateful to the great PT team at the Hebrew Home in Rockville, who got him started on his first steps. He’s excited to be working with the Adventist team, especially with Erica, a wonderful therapist with a magic way of inspiring a sense of “I Can Do It!”

To help his efforts, Bob wears a specially designed pair of “boots” which give his legs support. Even more important: consistent, loving support – visits and beautiful messages from his Williams Syndrome family, as well as from aunts, uncles, cousins, dear friends, and fellow workers from the Government Printing Office. As he moves through this life-changing experience, he tries to see what’s happened and what’s ahead with new understanding. His sister Susie has been his special mentor in this ongoing process – listening, helping him to find words for feelings and to keep his emotional balance in the face of so many changes and uncertainties. One of us is there with him for several hours every day, and his brother David and sister Mimi make the trip as often as possible.

His thoughts and insights are gifts to us as we travel this road by his side. He and Susie have been keeping a journal (he dictates, she scribbles down his words) of his reflections, his difficulties, pain, grief, and wishes. What has helped him get through? “Low expectations,” he dictates, drawing on conversations he’s been having with his sister. “One day at a time. And waiting to see what comes…”

Yesterday, he said, “I can walk gingerly, but I can walk. And from little seeds, flowers can grow. I’m hearing the Indigo Girls’ song in my head – ‘Closer to Fine.’ And that’s the way I feel – a little bit closer to fine.”
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Bob stood today!

From Barbara:

Have you heard? - Bob stood up today, for the first time. I saw it, with tears. He held on to the bars on each side, and as the physical therapist encouraged him, he drew himself to standing, then pumped his arm in the air, shouting, "I'm up! I did it!"
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EXTRA! EXTRA! READ ALL ABOUT IT! BOTH LEG CASTS REMOVED!

From Barbara:

This was a red-letter, high-fiving, fourth-of-July celebration day. The headline: The casts on BOTH of Bob’s legs came off!!

We arrived at the orthopedic surgeon’s office this morning, as planned, for a check-up of Bob’s legs. Dr. Jebraili had told Bob three weeks ago that if things looked good, he’d probably remove the cast on his left leg. But Bob had been terribly disappointed to learn, at the same time, that the right leg was still in such bad shape that there was no telling when it would be free of its cast. (It has an artificial bone, bolted in place in an extremely difficult surgical procedure, and an ankle that had been shattered in the accident.)

Then, this morning, after looking over the x-rays, the doctor thought a bit, and said to Bob, “Tell you what – I’m going to take off both casts.” He pointed to the pictures. “The left leg has healed nicely. Plus, the right leg is healing – and I think it will do better if you start using it.”

Both Bob and I began to cry with joy. We watched as the doctor opened the casts, removed cotton and bandages, and then – there were his legs – much thinner, the right one somewhat askew, pale but real. Bob gazed at them with amazement, as if he’d never expected to see them again.

He will get new casts that can be worn to give support as he starts to put weight on the legs, and removed when he’s resting. The doctor wrote out his prescription for rehab, shook Bob’s hand in congratulations, agreed that this was a terrific step forward, and told us to come back in six weeks. Wheeled back to the waiting room, Bob gave his news to the assembled patients, and got a cheer.

The news makes a tremendous difference, as you can imagine. Bob’s rehab had entered a kind of slow-down. Because he was unable to put weight on his legs, he was reaching the end of rehab eligibility (circumscribed by insurance regulations), yet was still in need of a program providing medical care, assistance, and enough exercise to keep him moving forward. He was in a holding period, waiting till he could really make progress. With the casts off, the windows of life are now open again.

Bob’s smiles were radiant as we waited for the Para-Med van to drive him back. As always, he tried to express his feelings in words. “All my hopes are validated.” You could see in his face that he was searching for a way to define the moment. “I can see the power of family and love. Now I’ll count my blessings and step up to the plate.”

We give thanks.
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Ups and downs...and ups...and downs...

It’s been almost two weeks since the last update, with more ups and downs on the planet of the Bob. But one thing that's remained in the up category has been Bob’s steady emotional and cognitive improvement. With a few understandable exceptions, he’s remained philosophical, if not downright sunny, tipping a little but never losing his balance as he’s processed each new wave of information.

Also in the up category:

Bob was moved to a room with a regular bed - no more “boondoggle” of a confining tent!

As his swallowing has restored itself, his appetite has improved.

He’s begun to be able to navigate in his wheelchair and to help a little with his transfers from wheelchair to bed.

All these things have been real progress - rehab! So his expected transfer to a nursing home was put on hold for awhile, and this delay has given him two extra weeks in the same excellent program at the Shady Grove Adventist Rehab Hospital, with its talented staff. We feel great thanks for their caring and dedicated work. The delay has also given him the gift of consistency of place, so important after the massive displacement and disorientation brought on by his accident. Now he knows many of the staff, and they greet each other by name when they meet, as familiar friends.

He’s become more conscious of his surroundings. At supper in the dining room the other evening, he mused, “One of the things I love about this place is how many different kinds of people there are here - the patients and the staff.”

There are things he loves about this place.

And down:

A CT scan of Bob's chest last weekend, to try to locate the source of his persistent cough, revealed a pulmonary embolism in one of his lungs. His doctors have prescribed blood thinners to dissolve the clot and prevent others from forming.

At his visit to the orthopedic surgeon this past Monday (made possible by Mom’s heroic calling, conferring, cajoling, and last but by no means least, couriering of the x-rays), Bob was told that while his left leg will probably be healed sufficiently to bear some weight in about three weeks, his right leg, with its very injured ankle as well as broken tibia, will take much longer - no date projected. That was a blow for him to process, which he did with loving help from the aforementioned Mom.

And down AND up:

That news also prompted Bob’s rehab team to decide that he’d reached the end of the rehab line for now - till the legs can bear weight. Mom & Dad visited two recommended, Blue Cross-approved, nursing homes with “sub-acute rehab” and felt strongly that the Hebrew Home’s rehab facility in Rockville is the best choice for now. A transfer was worked out, and he’s moving there today (Monday). One exciting prospect - the sunny recreation room with a beautiful piano. The entire rehab program at the Hebrew Home looks wonderful, and we’re looking forward to the next chapter in Bob’s recovery.

We write this, as always, with enormous thanks for the words and thoughts of support that have been flowing from all of you. Bob sends his love to all - and we hope he’ll be writing soon himself. (He was actually in a writing group at Shady Grove, and though he still isn’t able to get many words on paper, his ideas were described as inspiring.)

- Susie & Barbara
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"I flew through the air!"

It's been an up and down week, a week of on-the-one-hands and on-the-other-hands. On the one hand, for instance, Bob passed his swallowing test Tuesday and can now eat regular food and drink clear, unthickened liquids. He reports a new-found love of apple juice, applesauce and 2% milk. Today he ate a few french fries.

But on the other hand, Bob's being bounced out of the rehab hospital he's been in for about a week - an intensive program which turns out to be inappropriate for him at this point. At our progress meeting with his rehab team on Thursday, his various therapists gently but frankly used phrases like "impulsive," "lack of safety awareness," and "poor planning skills." Not much progress, not making progress, no progress, one after the other reported. The fact that he can't put any weight on his legs yet makes everything too hard. They all agreed that a transfer for now from "acute rehab," which this is, to "sub-acute rehab," i.e. a nursing home (where he'd get less intense rehab and, we'd hope, more social and recreational opportunities) is called for. And equally significant, Blue Cross requires "measurable progress" in order to keep paying for his care. So it's goodbye for now to Shady Grove, at least till Bob's legs have healed enough to support him. His rehab social worker here is coordinating with two or three possible nursing homes, and we're hoping that one of them will be both good and willing to take him. We'll find out next week.
On the one hand, Bob is still extremely upset, feeling "like a caged animal" in his "boondoggle of a bed," enclosed as it is with a zippered tent to keep him from falling or climbing out and injuring those legs again.

But on the other hand, his helpers have made sure to keep his phone inside the tent, and he's called several times with greetings, weather bulletins and requests for clean clothes. On the one hand, Bob's been very angry and sad this week. He's cried during all our visits, an hour or more at a stretch, as we sit with him holding his hand, wracking our brains for an approach (empathic? philosophical? breezy? distracting? humorous? silent?) that'll help ease his mood or lift his spirits. Mostly to no avail. "I want to go home!" has been his refrain. Home not being just "home," of course, but "before." I want to go back to before this all happened. (And who wouldn't? How could he not feel that way?) And don't give me any of your happy talk.


But on the other hand, there was today. Bob called us this morning, and Susie and Melanie went over to see him this afternoon. Bob was watching TV when we got there, but he turned if off as soon as we walked in. He greeted us enthusiastically, and, we talked as we waited together for the aides to take him out of bed and put him into his wheelchair, asking about his accident. "You don't remember?" I asked. "No," he said. So I told him what he'd told me about it when he was still in the ICU. "You told me that all you could see was the gas station and the trees," I told him. "That sounds like you were flying through the air."

"I flew through the air," he said, with wonder and awe.

He thought quietly for a minute after that. "You know the song Both Sides Now?" he asked me. Sure. "Well," he said, "it's like I've looked at life from both sides now." He paused. "From win and lose to hit and run. It's life's illusions I recall. I really don't remember much at all." (Those of you who know the song with easily see where his words converged and diverged from the actual lyrics.)

At that point, the aides arrived to transfer him to his wheelchair. Melanie and I went into the hall to wait for him. "I flew through the air," we could hear him telling them over and over. We wheeled him out into the cloudless blue afternoon, taking him the full circuit around the hospital building, his first "walk" outside since April 15. As he rode, he reflected more about the morning of his accident. "It was dark and raining," he said. "Otherwise it would never have happened."

Afterwards, sitting outside the hospital entrance and chatting together, Bob got suddenly quiet. "I'm sorry," he said, "I just got sad. I was thinking about how I missed the Springsteen concert." And he started to cry. "I know, Bob," I said, "that's why David got in touch with Clarence Clemons." He kept crying. "This won't be our last chance," I said. "Let's think about next year." He kept crying. "Well, let's go upstairs and have a concert ourselves," I said, remembering the keyboard in the rec therapy room. "Okay," he said.

Up we went. Melanie and I found the keyboard and power cord, moved a table and pushed Bob in. He pressed the on button. "This is a song Michael McDonald did when he was with Joe Walsh and the Doobie Brothers," he announced, "Takin' it to the Streets." He segued from that to another Doobie hit, "Listen to the Music," and from there into "Levon," by Elton John and then to "You May Be Right I May Be Crazy," by Billy Joel, winding up with "New York State of Mind." We clapped and woo-wooed after each selection. "New York State of Mind - that's a great one," I said when he finished it. "No Billy Joel medley would be complete without it," he answered. And then he pressed the off button and looked down at the keys. "I'm tired now," he said.

It was supper time anyway. So we put back the board and the cord and the table and wheeled him into the dining room. "I think this is where you need to be now," I said. And while, on the one hand, it was time for us to leave, on the other hand, Bob said, "I think it is," and kissed us goodbye.

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Clarence Clemons

Today's update is from Bob's sister, Susie:

Bob was moved from the ICU to Shady Grove Adventist Rehabilitation Hospital in Rockville on Tuesday. This is an excellent rehab facility, located, thankfully, less than 10 minutes from our neighborhood. Mornings are devoted to physical and occupational therapy, and meals are served in a large, light-filled dining room. Each patient has an entire care team, headed by a case manager, with whom Barbara has met. The general atmosphere is focused and lively, with bustling activity and a great diversity of patient needs and abilities. The goal is to guide patients to independence as quickly as possible, and stays are usually between a few days to a few weeks.

The initial transfer was confusing to Bob, and the first day he was quite disoriented and angry. He seemed to have thought that when he left the ICU, he'd somehow be transported magically back "home," where everything would be to the way it was, and so the adjustment to reality was rough. The first night, he tried to climb out of his bed; thankfully, he was discovered before he made it to the floor. To keep him safe without restraints, the staff installed a kind of tent-like structure with mesh sides that zip shut over his bed. Needless to say, Bob was not pleased about that. Grrrr.

In spite of all this, his P.T. sessions have gone pretty well. Erica, his physical therapist, gives him generous encouragement, and Bob's responded by working hard with her. He's also got a speech therapist, who is working with him on swallowing, which has been a real problem since the ventilator was removed a few weeks ago. She's helped him to be able to begin eating again, and his meals are served at a special table in the dining room for people with swallowing issues. He still has the PEG in his stomach for supplementary nutrition, but this is definitely a step in the right direction.

We've all talked with Bob about his issues with his "tent," and he's pretty well accepted that it's not there to punish him, but to keep him safe and make sure his legs can heal. He's even discussed it with his nurses and promised that he won't "try anything stupid" if they leave the sides open, which they do as much as possible, especially when he has visitors...

...which he did on Friday - his 52nd birthday! The staff began his day by bringing him a bouquet of balloons, which they tied to his bed. In the afternoon, Barbara, Susie & George arrived with handmade cards from Kevin, Melanie & Jeremy, along with a framed picture and bio of Bob, written by Walt, to hang on his wall - to introduce his caregivers to the "real Bob". When we gave it to him, he held it in his hands and read every word before looking up with a smile and pronouncing, "That's the real me!"

The best birthday gift of all was a phone call that came in at 4:40: "Hello? This is Clarence Clemons. I'm calling to wish Bob a happy birthday." Yes, the Big Man, himself. Several months ago, Bob had bought a ticket to the Bruce Springsteen concert here in D.C. that took place this past week, as a birthday present to himself. After the accident, it was clear that there was no way he'd be able to make it to the concert, so his brother David, who's interviewed Clarence a number of times, started the process of getting in touch with his "people," to see if they could make something happen in time for Bob's b-day. And as we all know, once David decides to get something done, it does get done! He told us that when Johnny Green, local concert producer and Clarence's long-time friend, reached him, the Big Man thanked him for the opportunity to call Bob. And he placed the call himself, no intermediaries. Do we need to tell you how happy Bob was? I don't think so. Big, big grin as they talked, telling each other they were each their guiding light, with "God bless"es all around.

"I'll be checking back with him," Clarence said as he hung up. So something magical did happen after all - in spite of the tent, the still-broken legs, and the long, uncertain road ahead. On Saturday, Barbara, Walt, Susie & George had supper with Bob in his dining room, and Sunday Mimi & company came down from Phillie to see him. Barbara has told Bob's social worker about Bob's piano playing, so we're hoping that this weekend's rec therapy will include a visit to the keyboard. Things are changing every day, but that's the news as of this moment. And now, on to tomorrow.

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