May Summary

Will's evident grief at his situation continued into the first half of May. But then, about mid-May, he seemed to begin to come to terms with his stroke and to accept and acknowledge that it really did happen.* It began with some unexpected remarks by Will to his parents on May 16th, and gathered steam with a "we all need to sit down and talk this out" session the last week of May. It feels a little like Will crossed a high, barren mountain pass and began his descent down the other side to a green valley below. It will be a while yet before he gets to the valley, but the destination seems reachable.

* Will has begun sessions with a neuropsychologist, Dr. Mayer. Dr. Mayer says that common symptoms of thalamic stroke are that the patient often doesn't believe he had a stroke, and the patient is not aware that the stroke has placed any limits on him (see next post).

Will's Goals

When Will came home from Ohio, his speech therapist asked him to identify some goals. He said he had four: 1-be normal 2- get a job 3- get married and 4- get his driver's license back, not necessarily in that order. As his mom, I feel like it's my job to help him achieve those goals.
I spent Thursday on the phone lining up therapy sessions for Will with Dr. Mayer the neuro-psychologist who will be administering the neuro-psyche exam which will determine how close to normal he is. I was also badgering the vocational rehab people to come up with an employment opportunity and trying to find a volunteer position on my own for him. I was interested in getting him linked with one of the local hospitals; however, all they were offering were one hour a week jobs at the information desk or the gift shop. That was not what I had in mind. I was thinking of a 5-9 job with some supervision and responsible work.
Rocky Mt. Hospice said they would try to find a patient who could use a "friendly visitor." I set up an appointment for him to go in and be trained, but the idea of him sitting by some dying or chronically ill person day after day, when he’s already depressed, did not sit well. I worried that they might yell at him if he didn’t talk loud enough, or be fed up with him if he couldn’t think of something to say.
After putting it on the back burner for the evening, and getting good night’s sleep, I got up to do my exercises and was in the midst of some heavy-duty leg-lifts, when then a flash of inspiration hit. Will could work in the temple! It was the perfect job! He could go there from 9-5, do different things, so he wouldn’t be bored and be paid in blessings! What a concept! Why hadn’t I thought of it before? I was so excited, I could hardly wait to wake him up and tell him the good news. Even though I woke him out of a deep sleep, he understood what I was saying and received it well.
I dropped him off at the temple about 10:30 Friday morning with a prayer in my heart that he would find the blessings he so desperately needs. He came home about 4:30 in the afternoon having done two endowment sessions. A light had been turned on. He looked more animated and confident than he has in a long time. I am hoping he will be able to be called to be a temple worker. He was doing initiatory when he was working in the Ohio temple and it seems like that would be a perfect place for him to work on his memory and speaking skills.

Will

Friday we went to Becca’s class at Canyon Elementary in Spanish Fork to show off Will’s mad story reading skills. Apparently his reputation preceded him and two other classes were begging to be invited to hear him read, so we got word on the way down we were going to be performing in the Kiva. Becca introduced us and cried when she introduced Will as her older brother. The whole thing was a very moving experience. Will read "There Was an Old Lady Who Swallowed a Fly" using all of his speech strategies. The children were so attentive, you could have heard a pin drop. Our violinist, Nola played a selection from "Peter and the Wolf" which lead into my story of "The Scholossips of Glossip." Will then did a very humourous rendition of "The Three Little Wolves and the Big Bad Pig." The little boys loved the pig's use of the sledge hammer, and the dynamite to blow up the wolves houses. I did "Tipping Off Teacher," and Will did a very sympathetic account of the "True Story of the Three Little Pigs," by A. Wolf. The children were telling Will how awesome he was and giving him high fives. It was really cute. One of the little boys gave Will his favorite possession, a red wrist band. We got a picture of them, putting on the different bows and hats from "Tipping off Teacher." The day was something we had anticipated for a long time and it didn't end there. The momentum of the occasion carried over into an spontaneous performance by Will the next day. He was at a campfire and asked to use someone else's guitar. He played and sang "Scarburrough Fair" Those in the audience were totally amazed. It was like the old Will was surfacing in a spontaneous and unrehearsed expression of confidence.

Dr. Edgley

Will had an appointment with Dr. Edgley Tuesday. Dr. Edgley noted that Will's speech had improved substantially since his last visit six weeks ago in that now Will's speech is much less spastic. Dr. Edgley told Will his highest priority right now was to work on speaking.

Dr. Edgley also gave Will the same short-term memory test he gave him at his first visit March 7th. The test works like this. Dr. Edgley says "I want you to remember three things: ball, truck, dog." Then he asks questions about the date, who is the president of the United States, and so on. Then he asks what the three things were. In March, Will couldn't remember any of them. This time he could remember one. When I listened in on this test in March, I knew exactly what was going to happen and I could still only remember one of the three things. I'll let you draw your own conclusions.

Will had a driving evaluation with an occupational therapist on May 6th. Dr. Edgley scheduled another one for Will for early July.

Good News and Bad News

The Bad News. Will sprained his ankle.

We credit Plavix for the bright coloration.

The Good News. He sprained it playing ultimate frisbee. Will also jogs and walks. We can't find any remnants of a stroke in his physical movement.

The Prognosis. Dr. Will examined the patient and pronounced "it'll be fine."

An Offer He Couldn't Refuse

Wednesday Will’s speech therapist, Lisa, came. She had him do a number of cognitive exercises testing his memory on different levels from mathematical calculations to recalling current political and cultural figures, to details of a picture he looked at last week. He did very well with almost all of the exercises. The contemporary figures were a little harder for him to bring up, but he did get those with some cuing. She suggested he might want to go it alone for a while using the strategies he’s been taught to see if he couldn't do with speech therapy what he has already done with physical and occupational therapy and that is out-grow their usefulness. It was a nice vote of confidence. Will decided to take her up on her offer. He gave her his latest treatise on lawn mowing along with a two week vacation from visiting him. The vacation idea suited both of them very well.

High-speed Internet? Job Shadowing? Where to Now?

The meeting with Bryce Clayton, the vocational counselor, was mostly filling out papers so he could send for Will’s medical records and try to determine from records and conversations with Will’s doctors, a plan for the retooling phase of his recovery. Bryce suggested he could help us get high-speed internet so Will could take classes on line. He also suggested a hand-held device that Will could use to record histories of patients so he won’t have to keep so many things in his head. He acknowledged that this was his first time counseling with someone who was a doctor, so he would be feeling his way along and would appreciate any suggestions we might have as well our patience while he tried to put together something that would work. Will is anxious to be back in a hospital setting doing volunteer work, and we are hoping something like job shadowing is a possibility since he is getting a little stir-crazy.

On Old Olympic Towering Tops

Tuesday Will and I went to Ogden to meet Dr. Greg Mayer, the neurologist who will be doing Will’s neuro-psyche exam. While we were waiting for our turn to be seen, Will filled out a novel length questionnaire and I read an article in a psychological magazine about the neurological benefits of combining blueberries with walnuts. I was ready for lunch when we were ushered into the doctor’s office. He asked some very interesting questions, like what was the most difficult part of medical school for Will, and if he could remember the pneumonic device they used to teach the parts of the brain. Will began, "On Old Olympic Towering Tops..." Dr. Mayer smiled at Will’s recollections. I, of course, had no idea of what they were talking about, but Will informed me later that "On" stood for "Olfactory Nerve." I would love to know what that "towering tops" refer to. However, we didn’t linger that long on any one question. The conversation proceeded comfortably with Dr. Mayer doing assessments of Will’s speaking, recollecting, motivational and cognitive skills. He ended up recommending a couple of half days in July yet to be determined for the neuro-psyche exam. The session was cut short because of a prior commitment we had made with a vocational counselor, in Bountiful. However, we felt very good that Dr. Mayer was scheduling the neuro-psyche exam when and how he was. We are hopeful that with the extra amount of time, the test will prove to be not only a good measure of Will's progress, but a viable prognosis for future recovery as well.

A Mother's Day to Remember

Mother’s Day was fabulous. The family gathered together for Sunday dinner and the viewing of the DVD the friends of Will sent from Riverside. They also sent a big framed picture of the residents and a smaller picture of the preceptors that worked with him. The DVD was the filming of a bake-sale, fund-raiser they were hosting in Will’s behalf. It was so good to see his colleagues, his doctors, fellow residents, therapists, and administrative staff, all of whom have remained loyal supporters, choosing not to forget him in their hearts or prayers, or pocket-books. As we watched the video, recalling names, faces, and acts of kindness performed in our behalf by these dear people, we recognized this chapter of our lives as being almost surreal, a dream in which bitter tears, sweet laugher, exultation and anguish intermingled in conversations with veritable strangers. Could this really be happening? Could we really be loved this much? Watching the DVD was a quiet affirmation of hope that we could. There are those who see beyond our current crisis. There are those who remain watchmen on the tower, working for the cure, praying for the miracle, waiting for the return. Receiving that care package was a shot in the arm, as it were; an immunization against despair. We have hung up the pictures of the Preceptors and Residents on either side of Will’s favorite painting of Christ as a reminder of what we are striving for and who is helping us. Thanks to all of you for hanging with us through the peaks and valleys of Will's Recovery .

Community Medecine

Thanks so much to Community Medecine for the pictures of Will's Preceptors and 1st Year Residents of 2007-2008. We received them over the weekend. Thanks too for the video of the benefit you held for Will. We are very touched by your thoughtfulness!

The pictures are on the wall in Will's bedroom. Will watched the video Sunday afternoon and very much appreciated the greetings and well-wishes expressed to him.

Morning Meds Monday - Friday

I am the lucky one to give Will his medications, obviously as the title indicates, in the morning Monday through Friday. I think its great. I do this after walking little sister Jess to school, after hauling myself back up the hill, and becoming a sweaty ball of nastiness. I go into our incredibly warm house grab his pills and drink and go to the amazingly even warmer bedroom. "Will, time to take your meds... look, you just have to take them and then you can go back to sleep." he grumbles back, "if I take them I'll be awake." My thoughts: 'wow, Will that was profound, just take your meds' as the sweat pouring down my face makes me wonder if the conditions of a sauna are any different. I stand patiently. Wait. Wait a little bit longer. "Will, if you take them right now this will be over." He then proceeds to roll over and pull the blanket over his head. 'Where have I seen this before? Oh yeah, in just about every one of his younger siblings. Wow this guy has influence.'
Usually this process doesn't take more than fifteen minutes each morning, but each day brings another, in some way varied, response. "You're really patient." "Don't you worry about it, just put them on my desk....I'll take them later." Long periods of pretended sleep. It's a lot of fun for me, but the poor guy has to deal with little sister Abs Monday through Friday....Ü

The Diving Bell and the Butterfly

Friday night we watched The Diving Bell and The Butterfly, a movie about a young french man who suffered a major stroke near the brain stem. After being in a coma for several days, he awoke. At that time they were able to assess the extent of the damage. His entire body was paralyzed except for one eye. The only things that weren’t paralyzed besides his eye, were his imagination and his memory. With these three things: his one good eye, his imagination and his memory and a staff of devoted women, he was able to dictate letter-by-letter, the words of a remarkable book. Ten days after the book was dictated and transcribed, he died.
The movie was very reminiscent of our experiences with Will. I really related to the doctors standing around commenting on the effects of the stroke upon the body; the tongue not being able to move, the throat not being able to swallow, the lips not being able to perform their proper function, the entire digestive system totally shut down, the subsequent need for a feeding tube to keep alive the passionate spirit of a vibrant young man, trapped in a body that was in lock-down mode.
As I watched the father cry over the plight of his son, my heart went out to him. His son was so much worse off than mine and the father was much older and less able to care for him. Friends took over the parent’s role including taking him on a pilgrimage to Lourdes to be blessed. As I heard them tell him of their hopes for him and of the many prayers that were ascending his behalf by people around the world, I remembered the prayers prayed in Will’s behalf. I thought of the healing blessing given to him in his apartment by his roommate before the ambulance came, of the prayers of the Methodist Minister at Riverside, the prayers offered in his behalf in temples throughout the world, his father’s healing blessings and the prayers we pray each night as a family.
Watching that movie was a chance for me to see how adversity breaks down barriers and builds up communities of faith and hope to sustain the suffering in their afflictions. Out of the prayers of the faithful in this young man’s behalf came a great book and movie. Out of the prayers of the faithful in Will’s behalf has come an even greater blessing, a remarkable healing. To all of you who have been and continue to be a part of the miracle we extend our heartfelt thanks.

One-month follow up to heart procedure

Will went to the University of Utah Cardiovascular Clinic to get a follow-up trans-thoracic echocardiogram (TTE) to check the placement of the Cribiform Occluder that closed the PFO.

Tracy and Adam were the technicians. Sarah and I watched on the monitor. We saw where the blue blood was going into the heart chambers and the red blood was coming out. The valves were opening and closing to allow for the flow of blood. The device itself appeared as a shiny object which seemed to be well-anchored, but you really couldn’t tell if the fibers of the heart were growing into the mesh of it or not. The technicians were specifically instructed not to do the bubble test, so this was a slight departure from the TTE we saw after the closure of the PFO.

After the TTE, we went to exam room #11 where Will was given an EKG by Michelle. That showed no abnormalities at all.

When Dr. Stilianos Efstratiadis came in, he said he and Dr. Michaels had looked at the TTE and were pleased to see that the PFO had been closed and the atrial septal aneurysm had been stabilized. Dr. Efstratiadis said Will’s chances of suffering another stroke were about 0%. That was very good news indeed. Will will be on Plavix and baby aspirin until October. At that time, if things continue to go well, they will discontinue the Plavix. He will be on baby aspirin for the rest of his life. He is also to avoid contact sports for the next five months, but is encouraged to jog, swim, play basketball and do other heart-strengthening exercises.

*(a note from Sarah) I'd like to apologize for the lack of pictures. We took pictures specifically to put on the blog, but due to a camera malfunction, were not able to retrieve them. Sorry.

April Summary

In February, when we heard that Will had a stroke, we were stunned, incredulous. It took days for some of us to accept in our hearts that such a thing had really happened. It was not until then that we were able to shift into high gear in the effort to help him.

In April Will began the process for himself that we went through for him in February. He experienced several episodes of industrial-strength grief. But I've watched as he gathered his will (no pun), as if to say, "this will not have the better of me." In-between, his optimism and good humor animates him.

Over the month:

1. His speech improved as he gained control over more parts of his speech apparatus.
2. He takes more initiative in common situations, not just to read.
3. Over the past two weeks he's taken up an extensive social life with a Bountiful friend.
4. His memory has improved.
5. Compared to when he arrived in Bountiful in March, a friend says he now has a sense of purpose about him.
6. He plays his piano. His choice of Church hymns reflects his feelings:

Be Still, My Soul

Master, the Tempest Is Raging

'Tis Sweet To Sing the Matchless Love

Because I Have Been Given Much

Will's Platform for President

On Tuesday Will's speech therapist, Lisa, gave him a choice of writing assignments. He could write a movie review or his platform for running for president of the United States. He chose the platform.

Thursday morning he sat down to the computer and put together what we think rivals or surpasses anything either of the two major political parties have come up with so far. We can only hope one or more of the leading contenders will stumble upon Will's Recovery blog and take notes.

President

If I were president of the U.S. a few thing would have to change. Not big things of course, just minor things. Things that nobody cares about anyway. Things like how the White House is decorated or who the judges on the Supreme Court are. Anyway, I’m just saying what I think. You can have you own opinion. You won’t offend me.

First of all. I think that the tax ought to be flat. Not wavy like it is today. I say that not because I don’t have enough money. Although I don’t. But because I have too much (I know that this is a contradiction in terms) and it needs to be spread out evenly. Sure the government can have some of my money. We need roads and swimming pools and stuff. But of course I need stuff too. A car to drive, a house to live in, a pool to swim in (if the city hasn’t already built one). Anyway, the tax should be flat.

I also think we shouldn’t drive on Sunday. With a few exceptions of course. We can drive to church, and of course the newspaper has to be delivered. Actually there are a lot of exceptions to this rule, that I can’t get into here, suffice it to say that we should try to avoid driving on Sunday.

I would also redecorate the white house. I think it would look better blue, but that is my own personal opinion. You may think it looks better gray or pink or white. I don’t care, what you think and when you’re president you can think up a different game plan. Anyway we won’t go inside now because I can tell your flustered but believe me it will be great.

Last of all I would appoint the judges myself. They would consist of my brothers. I have a few of them. And of course they would do a good job. The bad guys would go to jail and the good guys would be let off to jump in their pools or something. Anyway that’s what would happen if I were president.