Off the Plateau

Will , who had been on a plateau for a while, has been making some good progress recently. He has been working for a humanitarian firm called Globus Relief International in the shipment of medical supplies to devastated areas. His work there is very demanding and his boss is very excited to have someone who is so versed in medical terminology on the team.

He is also working in the Bountiful Temple on Saturdays. He works in the temple cafeteria where all the ladies love him. I know because they call to make sure he is coming. When I assure them he was on his way, they were very happy to hear it. He left one morning before the snow plows were out. It was a scary thing to watch him slip-sliding his way up the ice hill, but he seemed up to braving the storm. It seems to be something he does very well these days.

In our speech therapy sessions, he has been showing remarkable recall. I had him choose a favorite tongue twister and he chose a couple that we hadn’t done since August. (They were not my favorites so I completely dropped them.) I was absolutely flabbergasted when he came out with Fanny Finch fried five floundering fish for Francis Fowler’s father and Does Moses suppose his toes were a rose? When I remember the first time he spoke a sentence in Ohio that I could understand, "Mom, do you have a two?" (We were playing Go Fish.) I realize how far he has come.

His executive function is also kicking in. He bore his testimony in church on Sunday. (The last testimony meeting he would be eligible for the young single’s ward before they kicked him out for being over thirty.) The bishop commented on what a beautiful spirit it brought into the meeting. His fiance, Summer, told me it was short and centered in Christ and all the other testimonies afterward reflected the influence of Will’s testimony.

As the day of the wedding approaches, we are seeing more and more restoration. My prayer currently is for stamina. Will still needs a lot of sleep and the idea of him being able to stay awake and alert for 30 hours straight is still pretty daunting.

Update

It has been a while since we posted on Will's progress so I thought I would share with you some of the things that have been happening. Progress is being made in the two critical areas of recovery: 1- Executive Function and 2- Memory.

As far as memory goes, Will has good recall of events of yesterday and plans for the immediate future. His medical memory remains at a very high level. He gave us a very excellent review of the molecular structure of Omega 3's and Omega 6's around the lunch table the other day.

In Executive Function, he has pretty much taken over his own finances. He keeps an excellent journal and structures his days very responsibily. However, he still tires easily and his speech is slurred when he's tired.

We have decided to remove all timetable expectations pertaining to his residency. When he does return he will return as a PGY1 (Post Graduate Year One). Residency years begin July 1st, so he could possibly go back as early as this July or a year from July, or later. He was disappointed that he would not be able to count the first seven months of his residency, but grateful that he could return when he was ready.

He continues to job shadow a family practice physician on Wednesdays and a neuro surgeon on Tuesdays, Thursdays and Fridays. He also works in the temple every other Saturday. His spirits are good. His fiance is largely responsible for this. She is his best therapist as well as his best friend.

We are keeping in close contact with the physicians at Riverside Methodist Hospital in Columbus and appreciate their expertise and counsel as we address new issues raised by changes in the ungoing saga of Will's recovery.

Medical History Form

Will has been asked to write more detailed histories of the patients he sees in the clinic of the family practice doctor he is job shadowing. Because his stroke affected his language skills, he continues to struggle expressing himself with verbal and written language. A form has been created to assist him with medical history taking which could probably use some help.

A SAMPLE HISTORY FORM

1- Patient’s Name_____________
2- Patient’s Age______________
3- Patient’s Blood Pressure______
4- Patient’s Weight__________Height_____
5- Patient’s Temperature_______________
6- Patient’s Signs and symptoms__________
7-Allergies__________________________
8- Medications_______________________
9- Past Pertinent History ________________
10- Events Leading to the problem _________
11- Problem_________________________
12- Diagnosis_________________________
13- Prescriptions and/or procedures_________

Any insights or resources on taking medical histories would be greatly appreciated.

Cardiovascular Follow Up

Tuesday Will and went to his follow-up Cardio appointment with Dr. Michaels at the University of Utah. Before meeting with the doctor, he had an echo-cardiogram and an electrocardiograph. These images showed his closure looking secure and well healed and he has been given the green light to go ahead and play racket ball, football and any other sport he wants to. He is officially off Plavix, but will be on a daily dose of Ecotrin, ( baby aspirin) for the rest of his life.

While there, Dr. Efstratiadis was so impressed with the progress Will has made in the past six months, he called a physician in the Internal Medicine Department to see if Will could job shadow in that department while preparing to return to his residency in Ohio. It turned out the person who makes these decisions was out of town and wouldn’t be back for a couple of weeks, but it was kind of Dr. Efstratiadis to make the call and offer to follow up on it.

In the mean time Will's speech therapist, Lisa, from Sugarhouse Rehab, is being brought back on board to help with speech and cognitive therapy. Will is beginning the fourth and final quarter of the year following the stroke. He is anxious to do everything he can to make the remaining months in which recovery is said to be the fastest, as productive as possible.

Meeting with Dr. Edgley

Thursday Oct. 2nd was Will’s latest meeting with Dr. Edgley. There were four of us cramped into a very small examining room: Summer and Will and Wally and I. Summer kept the conversation light and lively while we waited the interminably long time for Dr. Edgley to saunter in. The meeting was the most encouraging yet. He was very congratulatory about Will and Summer's engagement, which was comforting to Summer. She was afraid they were going to be told to hold their horses and back up a bit. They were taking this all a little too fast!

For those of you who haven't heard already, the wedding date is set for Dec. 30th in the Salt Lake Temple. A reception at the Bountiful Central Stake Center is planned for later that evening. You are all invited to the reception. Summer is a wonderful girl, the proverbial blue-eyed-blond. She and Will are the same age. They both served missions in Argentina. They have been friends for five years. In the face of Will's stroke, Summer has been a beacon of light, a ray of sunshine in an otherwise dark and frightening world. We can't say in words what Summer means to us or how blessed we feel to have this angel of mercy sweeping in with open arms cheering, blessing and brightening Will's life. It has been her private errand to keep Will's spirits high and she has done an amazing job.

Marriage was one of the four goals Will had expressed a desire to achieve on his first meeting with Dr. Edgley. The first goal was to be normal. The second one was to get his driver's license. The third one was to get a job, and the fourth one was to get married. Happily Dr. Edgley encouraged Will to go forward with his life focusing on two things: his job with Globus Relief International and preparing for the Step III exam. When he gets these two things under his belt, I am hoping things will be pretty much back to normal and he can return to his residency.

Later in the day I cornered Dr. Ward and asked him about Will’s job shadowing. (Will has been job shadowing Dr. Ward, a family practice doctor, every Wednesday for the past few weeks.) He said Will needs to do much more detailed histories. Will’s were about one-third the length they need to be. This is definitely something that needs to be addressed. I hope he picks up the ball and runs with it. I would like to put Dr. Ward at ease about this.

Friday Will and Summer went off together to get their portraits taken for their wedding announcement. Will was sporting a bright yellow tie to match Summer’s golden hair. They are thinking of Ohio or Park City for the Honey Moon. I am thinking this is going all too fast. Will’s next appointment with Dr. Edgley will be as a married man. YOWSER!!!

Speech Therapy

As some of you may know, Will's formal therapies were discontinued some time ago because they were either deemed unnecessary or non-productive. After a while, it became clear to me that they were still necessary and needed to be re-instated. I decided to try speech therapy. The exercises included breathing exercises for projection, lip rounders for precise articulation, jaw droppers for strengthening the soft pallet and opening up the throat, tongue twisters for clarity of vowels and consonants, and humming for head resonance and volume.

As we began these exercises, I pretended I was a therapist to one of Hollywood's brightest and most shining stars, having Will say such things as , "How now brown cow!" and "a big black bug bit a big black bear." It was fun and I was pleased to see that Will was entering into the spirit of the therapies. He did them for sustained periods of time and with some effort and it wasn't long before I was noticing that it was making a difference, not only with his voice, but also with mine. These were therapies that worked!!!

A statement of a friend whose brother had suffered a stroke prompted the reinstatement of these therapies. She said. "My brother recovered all but his left arm and that was because he refused to do the therapies that were given him for that." It was a haunting statement because I thought, "if Will always speaks with a slur because he never got the speech therapy he needed, I will feel personally responsible. I teach Elocution. I should have the resources at my fingertips. I should be his therapist." As soon as I took ownership of this phase of his recovery, I remembered where the resources were and went to work.

In one of the notes by one of the exercises it said, "the voice muscles need to be exercised just like the leg muscles if they are to become strong and perform their proper function." Will's stroke knocked out his ability to swallow. His tongue, throat, and lips were frozen in a type of paralysis similar to my friend's brother's arm. It made perfect sense that Will's speaking muscles would need to be worked on, exercised and strengthened if they were to regain full function. Teddy Bruschi had physical therapists to help him reclaim his acumen as a foot-ball star, Will had his mom. Neither man had been left without resources for recovery.

Currently I am looking for some exercises that might help with the return of Executive Function. This is the part of the brain that causes a person to initiate behaviors. It is located in the frontal lobes and is one of the highest forms of reasoning; a demonstration of a person's will. Leaders of men have lots of Executive Function. Will acquired a great deal of it while he was a missionary in Argentina. I know he can gain it back with some help and effort.

In as much as many of you are people of faith, I want you to know that your fasting and prayers have enabled him to perform at an amazing level of 83% over all in his first neuro-psyche exam, a fete which is nothing short of miraculous. Humbly and with a sense of great indebtedness, I am asking you to please pray specifically for Will's ability to reclaim his Executive Function. It is such a critical part of the recovery.

June through August Summary

From my observation, Will made huge progress in interpersonal interactions during the summer. It began as he got very involved with his nephew Simon and with Summer's nieces and nephews. He entered into more conversations with his siblings about the time Chris returned from Brazil and Lizzie visited from New York City (last half of July). He now initiates conversations, ask questions, comments on the responses, and keeps the conversation alive.

I discussed this with Dr. Mayer on July 29th. At that time, Will had met with Dr. Mayer 8 times but had never opened up to him. The usual patient would have become a non-stop talker by that point in therapy. Dr. Mayer offered some possible explanations: (1) An interaction with a child may be less demanding than one with an adult, so Will more readily enters into it. (2) Will may have neurological (brain circuits don't work right) difficulty in forming sentences to make a conversation. (3) Will may have psychological reasons (a motive) not to talk with people, so they wouldn't find out how broken he thought he was. At the end of July, Dr. Mayer was leaning toward the neurological explanation, but wasn't sure.

Yesterday Dr. Mayer said he thought that Will's deficit in brain executive function was definitely neurological, and that the tests showed that the whole brain was affected; there was no localization to one side or the other. He also mentioned that Will had begun to open up to him in their most recent sessions.

Neuropsychological Evaluation

On August 25th and 26th Dr. Mayer administered the Wechsler Adult Intelligence Scale III IQ test to Will. He adminstered all the subtests, including the optional ones. The final report isn't yet done, but Dr. Mayer shared his preliminary findings with us yesterday.

Here they are at a high level:

1. Will's basic intelligence is intact.
2. On timed tests, Will's accuracy was 100% or nearly so, but his speed was very slow.
3. Will currently has deficits in most types of memory, but not all.
4. Will is currently weak in the executive function of the brain.

Some additional observations:

1. Will scored in the percentile range of 80 to 91 on many conceptual and analytical subtests. This is compared to the total population his age. If the test were normed to all people who had completed medical school, his percentile scores would have been lower.
2. In tests where speed was a factor, Will scored below the 10th percentile. Removing the adjustment for speed would have put those scores in the percentile range of 30 to 50. My own speculation is that Will thought this evaluation was important and cared about the results, so he chose to optimize on accuracy and to let timings be what they may. He may never have thought of balancing speed and accuracy.

• The Stroop test is an example. There is a long list of words that are the names of colors (the names of only 4 colors are used). Each name of a color is printed in a colored font. The color of the font is always different from the color described by the word. I.e., the word 'Blue' is always printed in red, or green, or tan type. The first time through you say the words. (If the word is 'Blue' you say 'blue.') The second time through you say the color of the font. (If the word 'Blue' is printed in red, you say 'red.') The first time through Will did well. The second time he only got halfway through the list in the alloted time. But in that time he only made one mistake.

1. Dr. Mayer talked about 7 or 8 types of memory:

• Long-term: The adage for this one is "First learned, most rehearsed, last lost." Long-term memory is usually not affected by a stroke, and this is true for Will.
• Short-term: This is working memory and is important to attention and concentration. Will scored quite high in this area and got corresponding high marks in attention and concentraton.
• Aural/Verbal and Visual: Not so high. Will has a learning curve, which means he improves with repetition, but his learning curve is not as steep as for most people, i.e., his rate of improvement with repetition is lower.
• Immediate and Delayed: Not so high. Immediate is being able to tell a story back right after he's heard it. Delayed is being able to tell it back after 30 minutes filled with other activities. When telling a story back, Will does well in relating appropriate story themes, but not so well in including the details.
• Episodic: This is being able to relate your experiences. [I don't remember the evaluation of this one. This might be part of long-term memory.]
• Prospective: Not so high. This is remembering what you plan to do.

1. Prospective memory is related to the brain's executive function, but is not the same thing. Prospective memory is keeping a task or goal in mind. Executive function is figuring out how to do it and then making yourself do it. Will currently has deficits in both.

Guitar Lessons

Friday Aug. 1st saw Will at the home of Sherrae Phelps, a young mother who teaches guitar lessons. He brought with him a book of campfire songs and his guitar. A few nights earlier he had totally wowed his audience with his full throated vocal versions of "Swing Lo, Sweet Chariot," and "When the Saints Come Marching In." It was concluded that if he could rock out that well to these gospel songs what might he do with them and a guitar? According to Sherrae, he did very well. All of his self-taught guitar strumming came back and she was able to give him some pointers on some of the specific songs in the campfire book. The benefit of music in stroke recovery has been well documented and we are hoping that the combination of singing and strumming will pack a particularly powerful punch.

Driver's License Renewal

Thursday July 31st saw Will at the DMV applying for a renewal of his driver’s license. He got there just fine and then remembered he had forgotten Dr. Edgley’s letter giving him permission to go ahead with the renewal. After conferencing with Mom, it was decided he would continue filling out forms while she went out to the car and called home for a backup to bring the letter. Three sisters volunteered. Will then remember he had forgotten his contacs which he would need to pass the eye test. Fortunately he knew where the contacs were and his sisters had not left home with the letter, so the problem was easily remedied. Once Will was in possession of the forgotten items, he aced the eye test and the written exam, took a nice photo, and walked out of the DMV legally licensed. Hurrah!!! (By the way, he passed the written exam with 23 out of 25.) GO WILL!!!!

Crossing the I-Beam

For those of you who have been wondering what has happened to the Blackhursts? Why haven't they been postings on the blog? Has Will been making in any progress? Has he reached any new milestones? The answer is that progress is being made. Will's speech is becoming more amplified and less slurred. His short-term memory is coming back and his spirits are improving. He has been approved for getting his driver's license back.

The first time he took the test he passed with an 85, but was not granted his license. The second time he took it, his score was a 91. This was deemed acceptable. He grateful for the return of this priviledge which will be useful as he continues his pursuit of job opportunities. He has applied for a number of positions in the medical field, but has not received a specific offer yet. While he is waiting for that, there have been plenty of things going on at home.

Will's younger brother Chris returned from his mission to Brazil on the 18th of July. His sister Lizzie arrived four days later on the 22nd from New York, bringing her baby Simon, and whole family came together again for the first time in three and a half years.

Will is the oldest and has watched over the flock like a tender shepherd from day one, so he has been pretty animated about these reunions . As long as your have your family, you have everything that's truly important.

There is healing in togetherness and we have witnessed that as we have caught glimpses of the old Will surfacing. We have seen it in his eyes that have become brighter and more twinkly, in his speech that is more full throated and animated, in his prayers which have been more thoughtful and reflective, and in his humor which has been filled with mirth mingled with memory. Little children seen to be especially capable of evoking responses from him that suggest a full and complete recovery.

In a recent conversation with his Rehab Doctor, Steven Edgley, Will asked him the question, "What motivated you to get back to your residency after you had your stroke?" Dr. Edgley replied, "There were two things. One was all the time and effort I had put into getting through medical school. I didn't want all that work to be wasted. The other one was I had a wife and children. I wanted to be able to provide for them."

Discovering what it is that you will cross the I-Beam for is a very critical component in the healing process. For Will, as for Dr. Edgley, the answer seems to be found in the family.
Posted by Mom

Insights Into the Neuro-Psyche Exam

Wednesday, July 23, 2008

In his Tuesday visit with Dr. Mayer on July 22nd, Will asked some questions regarding the upcoming neuro-psyche exam. Happily, Dr. Mayer was open to sharing with him the main areas of focus in this assessment which Will is scheduled to take on the 25th and 26th of August. This time frame was chosen because it will give Will an opportunity to get back into speech therapy during September, should he need further assistance.

The exam is broken up into segments dealing with Attention, Concentration, and Memory. Memory is broken down into Visual memory, Auditory memory, Delayed memory, Recall and Recognition. They also test Executive Function to see if the frontal lobe has been affected in its ability to stay on task and deal with distractions such as starting and stopping. There is also an assessment of Verbal function including amplitude of the voice, Perceptual function and Motor function. Mood and coping styles are also analyzed. Strengths are assessed with an eye to using those strengths to help compensate for any weaknesses that may be noted.

To help Will prepare to take this exam, Dr. Mayer suggested we work on Semantic memory (recalling the Presidents of the United States etc.) Episodic memory (what did you have for lunch yesterday.) And Prospective memory (what are your appointments for tomorrow.) He also encouraged him to keep up his journal writing and to work on getting those words that are on the tip of his tongue out of the files and onto the air waves.

Will has some significant work ahead of him, but the time table for executing it seems manageable. For those of you who are following his progress, we make mention of this exam in some detail because of the importance of it. The results of this exam will be heavily weighed in terms of assessing the impact of the stroke on Will's abilities to perform the work of a doctor. If you are still remembering him in your prayers, we would ask that you specifically mention this exam and his ability to perform it well.
Posted by Mom

Slings and Arrows

This week Dr. Mayer observed that Will has put a buffer around himself to protect himself from the "slings and arrows of outrageous fortune"* and that have continued to plague him. He suggested he needs to "take up arms against a sea of troubles and by opposing, end them." Meaning, he would like to see a little more fire in the belly.

His recommendation to achieve this fire was that we as his friends and family be as pro-active as possible in engaging him in conversation, games, and other cognitive exercises. We are to be clever too, disguising our therapies so that he doesn't resist them but moves happily from the familiar, to the unfamiliar, from the simple to the complex. He suggested exercises like saying the months of the year forward, then backward, then backward, adding sixes to the ends. To December you add a Zero, to November, a six, and so on until you end up at January with a 66. Will loved it. We recommend it to anyone wanting a quick little brain work-out.

It is our hope that success in these and other areas of cognitive recall, will have the same effect as his successes in the physical realm of climbing up to Angel’s Landing in Zion’s National Park and wading through Zion’s Narrows. Such natural highs appear to be the keys to his continued recovery.

As for the "slings and arrows?"
*The bike shop lost his bike and all the records relating to it.
His mom put his cell phone through the wash. (Needless to say it is now toast.)
He has come down with a very infectious rash called Molluscum Contageiosum. (A rash similar to Chicken Pox for which there is no vaccine.)
Otherwise things are going well.

Dr. Gregory Mayer

Tuesday afternoon Will and I went to Ogden to have Will’s second visit with the neuro-psychologist, Dr. Gregory Mayer. Will went in alone and then I went in after he did. Will discovered that Dr. Mayer is from Bountiful and Dr. Mayer discovered that Will loved to play with Transformers when he was little. He thought it would be highly commendable if Will would participate in things like the triathlon and working as a volunteer at a free medical clinic. Dr. Mayer encouraged Will to talk on the phone as much as possible. Will's phone service has been restored, so those of you who would like to talk to him, can reach him at his old phone number. Though speech is the top priority, Will's continued participation in physical and occupational therapies were encouraged. Dr. Mayer said Will could develop new neurological pathways by repetition, like working out with a Hacky Sack or practicing the piano.

Dr. Mayer said neuro-psyche exams, which he did his dissertation on, are fairly good predictors of one’s capabilities for future success, but not always. Just like SAT and ACT scores used to be looked at along with GPA’s to predict success in college, now they are looking at other things like leadership, verbal skills, community service, etc. He wants us as a family to commend Will on any progress we note, like if he initiates activities such as mowing the lawns or taking out the trash without being asked. I thought those were great suggestions.

Will acknowledges that he is constantly thinking about the stroke and the impact that it has had on his life. He is very aware that life as he knew it has pretty much been put on hold and the support that he is receiving from others is critical to picking up that life and going forward with it.

He participates willingly in therapies which we have initiated such as going to the temple, studying his medical texts, swimming, doing spring cleaning, writing in his journal, reading and commenting on scriptures, and doing jigsaw puzzles. The visit with Dr. Mayer was very pleasant. He seems to be of a mind to let things unfold as they will and to enjoy the journey along the way.

Call for help to Columbus friends

We took Will's bike in to the shop for a major tune-up to get ready for the triathlon. Now the shop can't find it. Even though Will's sisters and dad have handled it, they are pretty vague on its description. This is the second bike Will owned in Columbus and his current memories are focused on the first bike he owned there, so he's not able to give as much help as we'd like.

So if any of you have a picture of Will's second bike--we're pretty sure it has a gray frame and shocks on the front wheel--please send it to us. If you have a picture of a black Schwinn mountain bike, thanks anyway, but that's the one we don't need.

Triathlon Training

Will has decided to do a triathlon in August. He was going to do a half-triathlon Saturday, but it rained cats and dogs, so he skipped the swim and the bike ride and just ran the 5K.

Summer is his coach and made the key decisions.

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.

Where did we go?

So you're probably wondering why the frequency of our posts dropped off so suddenly. Short answer: In Mom's case, follow on developments to her surgery put her in a debilitated state for 2 or 3 weeks. Only now is she starting to recover from that.

In my case, I kept my day job through all of this. Now that I'm showing up at the office again, they're giving me stuff to do. Also, I flew back to Columbus on April 15th to get Will's car and things. I drove back to Bountiful in 2 days, arriving in the wee hours of Friday morning the 18th. That and work kept me wiped out since then. But Will now has his car, piano (electronic), guitar, and other things we hope will be helpful to his recovery.

Abby and Sarah are home for the summer and helping with Will. You may see posts from them occasionally.

A Post-stroke Return

Wednesday afternoon Will’s speech therapist, Lisa, came with a wonderful article about Tedy Bruschi, a football player for the New England Patriots who had suffered a stroke and gone through extensive rehabilitation, mostly with physical therapy. The article really hit home. Bruschi is the first foot-ball player ever to return to the pros following a stroke. His success was attributed mainly to hard work and a good medical team working in his behalf. The therapists didn’t cut him any slack, but put him through exercises capable of restoring muscles to peak condition. The doctors closed up the PFO in his heart the same way they did Will’s and monitored his progress very carefully to determine the advisability of his resuming his career. After all was said and done the neurologists could find no reason why Bruschi shouldn’t be able to do anything he wanted to do. He and his wife decided he should continue to fulfill his life’s dream.
It was a very encouraging article, for while the part of the body that was affected by the stroke in Bruschi, was very different from Will’s, the age and general well being of both stoke victims was very comparable. Will’s bi-lateral stroke will likely require more time for healing, but his alertness and stamina continue to increase. His memory and speaking skills also show marked improvement. At times he sounds like his old self. He is currently taking cooking and institute classes, has become a very avid reader, and is participating in companionship study of the gospel with his returned missionary little sister. They currently have an investigator they are very eager to see enter the waters of baptism. Things are looking up!

Other Notes from Tuesday's Appointment

Will and I told Dr. Edgley about our 3-lap run around the Bountiful High School track. Dr. Edgley is very impressed that Will is able to run.

We discussed cognitive skills. Mom mentioned that Lisa, Will's speech therapist, had administered a shape-matching exercise to Will the day before. Mom sat next to Will and did the same exercise. Will beat her hands down.

Dr. Edgley will arrange for a neuropsychological evaluation of Will in early July. Dr. Edgley explained that Will had had several MRI's of his brain. The neuropsych eval is like an MRI of the mind. Its purpose will be to find any cognitive deficits that Will has at that time, and to fine-tune his therapy to address those deficits.

Wedding Bells and Other Goals

Tuesday Will had an appointment with Dr. Edgely, the doctor who is overseeing his recovery. He wanted to know how the Peg-tube removal and PFO closure had gone. Will assured him they had both gone well. Dr. Edgely was pleased, but asked Will to get his cholesterol levels checked to make sure his diet was consistent with the goal of maintaining a healthy heart. Will’s Easter candy is still sitting on his dresser, untouched, a quiet reminder to me that he prefers food with nutritive values. We hope the cholesterol screening will confirm that he is getting just that.
The next question was where did Will see himself in a year from now? His answer was "back in residency." The doctor thought that was a good goal and encouraged him to set smaller goals that might help him to reach that end. He asked Will what other goals he might have in mind. Will said, "get married!" The doctor didn’t think he could do much to help him with that particular goal, but he agreed it was a worthy goal to shoot for.
Wally suggested he might want to get his Driver’s Training course scheduled pretty soon. The reason is Wally is flying back to Ohio to pick up Will’s car on April 15 and will be driving it back over the next couple of days. He is hoping Will will be in a position to drive quite soon. Dr. Edgely felt that he could help with that goal and suggested the Occupational Therapist, Marc, be brought in to assess Will’s readiness for taking on the highway.
A goal of Dr. Edgely for Will is to check with the state of Utah to see what programs they offer in vocational rehabilitation. He suggested Will look at taking courses on line so that he could progress through them at his own rate. He also changed some of Will’s prescriptions to help magnify his cognitive recovery.
As the appointment progressed, I sensed that both Will and Dr. Edgely were sizing up the situation. Dr. Edgely was reading Will for any emotional deficits that might be understated, and Will was reading Dr. Edgley's assessment of his progress. He was receiving from Dr. Edgely’s assuring manner, a spiritual boules as it were. Things were progressing extremely well. I had wondered if the appointment was coming too soon after the PFO Closure, but concluded it was a very necessary visit.
As we left the University of Utah hospital, we ran into one of the doctors who had done the PFO procedure. He was happy to see us and we to see him. He had seen the pictures and article on the blog. It was gratifying to know that our circle of friends is being magnified through this whole experience.

The Traveler's Gift

Monday Will and I had a very enjoyable day. Lisa, his speech therapist, brought an article from the Salt Lake Tribune which referred to a project they are considering building on the University of Utah campus–a project which mirrors one that has already been built on the campus of Ohio State University in Columbus, Ohio. As Will read the article aloud, it brought the two worlds of Utah and Ohio together. Will had been in the Ohio State project and knew that both campuses would benefit from having commercial spaces where students and teachers could mingle together. Bringing communities of students, and teachers together as friends in an enriching and welcoming environment is definitely a worthy goal.
After Lisa left, Will and I started reading a book which Will's Aunt Mary Anne had purchased called The Traveler’s Gift. It's by Andy Andrews, a comedian, author, inspirational speaker, and serious fisherman. As we started out, it became apparent to both of us that this book was very pertinent to Will’s situation. The main character, David Ponder, had not suffered a stroke, but he had gone from being a successful executive to a desperate man within a few short months. As he faced his devastating losses, grief and overwhelming despair engulfed him. At the very moment when he was about to surrender himself to these seemingly insurmountable obstacles, he was granted an olive branch. He was permitted to go on a journey backward in time. There he met people from history who too had faced moments of extreme crisis. Each of them spoke to him, listened to him, and acknowledged awareness of his need for help. In the end, they each offered him a letter defining a key decision which had enabled them to turn their potential tragedies into triumphs.
As Will and I got into the book both of us started crying. It seemed that the author had been inspired to write it for us. I would like to share the seven keys because I think you will see their relevance. 1- The buck stops here. I am responsible for my past and my future. (We acknowledged that Will was not responsible for his stroke, but he does have the power to control the future. The past does not need to exert undo influence over the present or the future.) 2- I will seek wisdom. I will be a servant to others. (Who seeks wisdom more keenly or desires more earnestly to serve others than a physician?) 3- I am a person of action. I seize the moment. I choose now. (Anyone who was in the singles ward while Will was Elder’s Quorum President knows how hard he worked to meet the needs of the quorum and ward members.) 4- I have a decided heart. My destiny is assured. ( Now that he has had the PFO closure, his heart is decidedly less apt to interfere with the unfolding of his destiny.) 5- Today I will choose to be happy. I am the possessor of a grateful spirit. ( Everyone who has seen Will since his stroke knows how cheerfully he has faced this trial. His smile and sense of humor have lifted all of us.) 6- I will greet the day with a forgiving spirit. I will forgive myself. (This was the key offered by Abraham Lincoln who asked that the nation go forward after the Civil War "having malice toward none and charity for all." Will has felt the power of forgiveness in his own life, and is moving forward in that same charitable and forgiving spirit.) 7- I will persist without exception. I am a person of great faith. (Will is eager to go forward, resume his residency and reclaim all that was lost. His faith in the blessings that have been given him, that he will suffer no permanent losses and that his recovery will not plateau, is unwavering. That seed of faith, planted in his heart, has been nurtured by hope, and bolstered by his steadfast faith in the Lord Jesus Christ.) In the book, the key of faith was given by the Angel Gabriel.
Will and I started out reading the book together, but ended up reading it separately, neither of us being able to put it down until the last page had been turned. We recommend it highly to anyone wanting a positive affirmation of the power of the human spirit to rise above adversity.

Family Time

Will's four siblings who live in Provo came home for the weekend. We all spent a relaxing Sunday. Will held his own at Rummikub and went for an evening walk around the neighborhood with his sisters.

Boys' Night Out

The Saturday evening of General Conference weekend is when the Priesthood session of conference is held. The lay men of the Church who hold a priesthood office are invited. Will is an elder. The Blackhursts started a tradition 18 years ago, when Will attended his first Priesthood session, of going somewhere for a treat afterwards. Eighteen years ago, it was a dish of ice cream at Snelgroves on South Temple Street. Over the years the treat has been elaborated upon until now it is dinner at a restaurant. Tonight, dinner was at Marie Callenders. Will had the Saturday special, slow-roasted pot roast.

Solemn Assembly

The Blackhursts were fortunate to obtain 3 tickets to the Saturday morning session of the General Conference of the LDS Church in Salt Lake City. During that session a new president of the Church was sustained by the membership in what Church members call a "solemn assembly." Will had to get up pretty early compared to what he's been used to recently, but the service held his attention anyway. As soon as we got home though, he crashed and slept through lunch and much of the afternoon.

25 mm Cribrifom Occluder

Will's appointment for his PFO closure was at 1:00 pm.

7:55 am Cath Lab calls. Dr. Michaels has returned early from his conference. Could we come to the hospital as soon as possible?

9:20 am Check-in at surgical admitting.

9:30 am Arrive at Cath Lab.

9:45 am Will enters holding area, changes into hospital gown. Vital signs are taken and pre-procedure electrocardiogram (ECG) is done. Dr. Gupta explains risks of procedure and Will signs paper acknowledging explanation.

10:15 am Will is wheeled into room where procedure will be done.

11:00 am Sara, Cath Lab RN, reports that the Cribiform Occluder has been placed in Will's heart. The doctors are now closing up. Will received a sedative but was awake throughout.

11:15 am Drs. Michaels and Gupta come to report that the device has been correctly positioned and there were no complications.

11:25 am Dr. Efstratiadis comes to say Will has been returned to the holding area and we can now go back to him.

11:35 am Post-procedure ECG.

11:55 am Trans-thoracic echocardiogram (TTE) of the heart (through the chest wall) and a bubble study. This is an ultrasound of the heart. We get to watch the monitor. When the technician has a good picture with all four chambers of the heart, the nurse injects air into the blood stream. We watch the air bubbles travel through the heart. There is a blizzard of bubbles on the right side, but none that my untrained eye can see on the left. The doctors expect that there will still be bubbles immediately after the device is inserted. They will compare the recording of this TTE with the recording that was made during a trans-esophageal echocardiogram (TEE) in Columbus immediately after Will's stroke.

2:30 pm It's three hours after the procedure. Will gets up and walks a short distance. Then the nurse checks for bleeding at the incision. After that he goes downstairs in a wheelchair for a chest X-ray.

3:05 pm Will gets dressed and waits for the evaluation of the TTE and the X-ray.

4:10 pm Everything is fine. We leave the hospital. Follow up appointment is May 6.

Procedure team:

Andrew D. Michaels, attending physician

Saurabh Gupta, interventional cardiologist

Stilianos Efstratiadis, cardiology fellow


Nurses:

March Highlights

1. Will now eats regular food at every meal.
2. Will can drink "thin" liquids without aspirating.
3. PEG (feeding) tube is removed.
4. Will's speech becomes understandable.
5. Will begins to initiate activities on his own, mostly reading.
6. Will shows increased control of his soft palate--a promise of better speech to come.
7. General alertness increases over the month.

Graduation Day

Will asked how far he'd gotten in school. "Why?", we asked. Because he couldn't remember graduating.

"Yes, you graduated. You got an M.D. Now you're a doctor."

A few days later he said he still couldn't remember graduating. "But there were witnesses. Mom and I were there and watched it happen." "And you must have a diploma." (But that's still in Columbus.)

A few minutes later Will brought out his computer. We looked through his photos, and there they were: pictures Will took at the Shoe, including one he took of himself. The pictures unlocked his memory, and now he could remember that President Clinton gave the address, and he was one of the first in line when the graduates filed out.

"So Will, now do you believe you graduated?"

"Hmmm. I'm not sure. But it does prove I was in the line."

Spring Workout

I asked Dr. Edgley what physical activities were ok for Will. Could he jog? Could he run?

Dr. Edgley: "Will, can you run?"

Will: "I dunno. I can't remember trying. I don't see why not."

So this afternoon Will and I went to the Bountiful High track. Will took off like a jackrabbit. I hoped he couldn't keep it up, 'cause I knew I couldn't. After half a lap Will looked over his shoulder to see me struggling, and took pity. He slowed down to a manageable (for me) pace and we enjoyed a few more laps on a brisk, sunny afternoon.

Say "Ahhhhhh"

Wednesday was a great day for Will and for all who have been praying for him. He got up, ate breakfast, showered, shaved for the first time, put in his contacs, skunked his mom at several games of "Fish," and waited for his speech therapist to come.

When she came, she asked him to say "Ahhhhhhhhh." She was looking in his mouth while he did this and was totally blown away. The muscles of his soft pallet were lifting! Hallelujah!!! That nasal tonality in his speech was no longer his only option. He could actually speak through his mouth like an Englishman rather than through his nose like a Frenchie. He was then asked to read an article from the Salt Lake Tribune about the war in Iraq. He broke it up into small segments and read each one until he could do it clearly and distinctly. The result was very intelligible speech.

His homework was to continue saying "Ahhhh," in front of the mirror so he could make sure his soft pallet was getting a good work-out and practicing his elocution strategies in every day conversation.

PEG tube came out today !!

Will was early to his GI clinic appointment at 11 am, and they took him in right on time. Will's appointment was with Mary O'Rourke, a Physicians Assistant-Certified. She made a call to Columbus to find out what size tube Will had in his stomach, and then asked Will if he minded if she invited a student in to watch the removal. Will said he had no objection, explaining that he had once been a medical student too.

I had volunteered not to watch the insertion of the PEG tube, but I thought I could stand to watch its removal. The procedure for removal is to grab the tube and pull really hard until it pops out. I could've done it, but was sure glad I didn't have to. For a brief moment it looked like Will's innards were being extracted from his abdomen through a very small hole. Mary warned that it would hurt really bad, but only briefly. Will's OW! told us her description was accurate.

Will takes one adult aspirin a day, so they expected some bleeding, and got it. Another nurse came in to apply pressure to the tube site for 15 minutes. After that time the bleeding had stopped. They put new gauze and a pressure bandage on him, and we were free to go home. The bandage can be removed after 24 hours. The site heals from the inside out, and there are no restrictions on what Will can eat while it's healing.

Ohio and the Ties that Bind

Monday was a great day for Will. Two of his buddies from Ohio, Chris DeMoux and Christian Bahr, dropped by with boxes from Riverside. Chris brought framed pictures of some of Will's fellow residents, a BYU Cougar, a red monkey, Melanie’s hospital troll, Will’s contacs and a silk flower arrangement from Marilyn Neilson. He also promised to send Will some Buckeyes if he wanted them. Christian brought the OSU blanket, Katie Vasil, one of the residents made and the Rachmoninoff CD Dr. Glasgow had given him. It was so good to have these favorite items back in our possession.
Chris told Will they would miss him at the next Elder’s Quorum activity, a March Madness dinner featuring Pizza and Wings. He also said the Relief Society had consented to allow the Elders to join their book group provided they could recite a poem first. The book to be read is The Chosen, but the poem was not stated. Will had already read The Chosen, and gave two thumbs up to the Relief Society’s selection committee. He would love to be there for the discussion. Also on Monday Will worked out on the bowflex, did a crossword puzzle with Mom, played the piano, played basket ball with Nate and Jess and agreed to working on shaving tomorrow. (Jeremy's challenge for a beard-out continues to be a bit of a priority, thus the perpetual procrastination.)

PEG tube; New meds

Last Wednesday was the six-week anniversary of Will's PEG tube (feeding tube) insertion. Six weeks is the minimum time it had to stay in to prevent scarring. The therapists observed that Will was making great progress on being able to drink thin liquids (e.g., water), so they alerted Dr. Edgley and we went to him on Thursday to get his assessment about removing the tube. His conclusion was that the tube could come out that day. We tried to get an appointment for that afternoon, but had to settle for a time next Tuesday.

PEG tube removal is a prerequisite for the heart procedure. We have a call in to the Cath Lab to set that up for next week.

Dr. Edgley also made some changes to Will's prescriptions. Will will begin taking a number of over-the-counter supplements. He is also taking Aricept now to help his short-term memory. The benefit of that appears over the long term after steady use. The third change is to substiture dextroamphetamine for Provigil to help Will's alertness. Provigil is a newer formulation without much history of its benefits. Dextroamphetamine has been around longer and has been shown to have benefits for cognition.

Buddies, Blizzards and Buckeye Fever

When Will got home from his visit with Dr. Edgely, he was greeted by Claudia Peterson, the mother of Bryce Peterson, one of his Bountiful buddies now attending Ohio State medical school. Claudia had been to the Iceburg and brought with her two giant milk shakes for Will to choose from, one chocolate chip and one mint chocolate chip. Decisions, decisions!!! He sat there debating which to go for and finally decided to wait until he was watching the BYU basketball game later in the day. They talked about Buckeye fever and the fact that the whole town of Columbus, Ohio shuts down on game days, even the store clerks won’t wait on you because they’re all clustered around the television sets at the back of the store. She also commented on all the cute girls in the Singles Ward and how lucky Will was to get acquainted with all of these outstanding young women. She thought he had shown great restraint in not tying the knot with one of them already. He had also shown perfect timing in getting out of Columbus before the big snow storms hit. Will acknowledged that Columbians don’t have a clue about handling snow, so it is good to be as far away as possible when they get a blizzard.

Zeroing in on Cognition,the Peg Tube, and the PFO

Thursday Lisa and Kiera, the speech therapists, came with Betty Boughter and her bitter butter, and the Tutor who tooted the flute and tried to tutor two tooters to toot. Will was having a great time tying his tongue around those tongue twisters, but he had to tell the ladies to leave because he had to get to his appointment with Dr. Edgely.

The doctor was very interested in advancing Will’s memory and cognitive skills and stream-lining the therapy sessions to focus on the key areas that need retooling the most. Dr. Edgely also had rave reviews for Will’s uncle, who had e-mailed him with some suggestions for certain dietary nutrients which might speed up Will’s recovery. He said Jim Little had trained some of the doctors there at the University of Utah and was highly respected for his research in the area of spinal cord injuries and recovery patterns. He ordered some labs for Will to follow through on some of Jim’s suggestions, recommended some dietary supplements for Will to take and took him off one medication and gave him two others. He also arranged from him to have his peg tube taken out so that he could proceed with the closing of the PFO.

Balancing While Bouncing Balls

Tuesday Marilyn, the physical therapist came and had Will throw a ball in the kitchen while standing on one leg. It was pretty exciting. They had three rules: don’t fall over, don’t break anything and don’t hit anybody. They were successful pretty much in keeping all three of the rules. After Will act proved that he was nearly ready for the Ring-Ling-Brothers Barnum and Baily Circus, they decided to go for a walk. It was a beautiful day and they were able to go at a good clip for over half an hour. The walk was around the upper block, down to Davis Blvd., up Bountiful Hills Drive and around the upper block again. They noticed some people kept passing them in their car. Will wondered if they were casing the joint, but decided they were probably just lost.

A Date with the Ironing Board

After the Speech Therapists left, Kelli, the occupational therapist came. She was very impressed with his daily schedule plan and had him pencil in a few more activities, like lunches, and dinners. She then had him make his own lunch. He was going for a PB and J, but thought better of it and opted for a tuna salad sandwich, chips, and pop. She had him make the sandwich and clean up afterward. She then asked him if he thought that he had included all the basic food groups in his menu. He instantly realized he had forgotten something. (It was not the Butterfingers Group. )She also had him work out for fifteen minutes on the arm bicycle to increase his endurance. To encourage him to do his own laundry, she suggested he put his laundry basket in the bathroom so he could remember to keep his laundry separate from the rest of the family. He was okay with that, but when she mentioned ironing his Sunday shirt some more, he decided it was time for her to go. She left promising to remind Marc, the other occupational therapist, that he and Will had a date with the ironing board on Thursday.

A Bunch of Blarney

At 11:00 Will's speech therapists, Kierra and Lisa came in wearin’ the green, prepared to fill him full of Blarney. It sounded like they had brought the Blarney stone with them. He was feeding them all sorts of good lines. He was using all three strategies: talking loud, over articulating, and speaking slowly with very impressive results. He did especially well on the tongue-twisters, like pass the pepper, please; funny Fanny made fudge; and Will’s favorite, Mysterious Malcolm managed to mesmerize the audience wit his mental multiplication manipulations. He and Kierra both had tickets to the Jazz/Toronto basketball game that night, so they were pretty pumped about basketball. She had him work on his water swallowing with a straw, tucking his chin in to prevent aspirating and taking smaller sips. He did just fine with that and was particularly impressive when reading "The Little Red Hen," and "Oscar’s Rotten Birthday."

Blowing Off the Family Council the Job Chart

After a family counsel on Sunday night in which Will, made a schedule for himself. He woke up Monday ready to blow the whole thing off. He slept through breakfast and shower time, which were 7:00 and 8:00 a.m., but by 9:00 he was up and ready to roll. He ate and showered in record time, played the piano, including several hymns with both hands, and worked on some of his speech therapy homework.

Cardiac Intervention

Will had a consultation this morning with Dr. Michaels and Dr. Efstratiadis of the Division of Cardiology at the University of Utah Health Sciences Center. They had already reviewed all of Will's medical records from Columbus. In addition to Will's patent foramen ovale (PFO) [aka "hole in the heart"], he has an atrial septal aneurysm (ASA). In this instance of medical-speak, aneurysm does not mean something about to burst, but rather that the wall between the left and right atria (atriums?) of the heart moves back-and-forth in Will more than it does in most people.

They acknowledge that the cause of Will's stoke is unknown, but something did cause it, and so far nothing in Will has changed to prevent a new stroke. Perhaps a clot from somewhere else in the body passed through the PFO and went to the brain; perhaps a clot formed in the heart itself because of the ASA. Both these conditions are suspected to be contributors to strokes in general, so they recommend that both be addressed, and sooner rather than later.

The closure device they recommend using is one that is rated for the ASA. It will close the PFO and will stabilize the septum. It is about the size of a quarter. It will be inserted through an incision in the groin that accesses an artery or vein to the heart. The device will be inside a narrow tube that will be threaded through the artery or vein, then inserted into the heart and deployed from the tube. They said this is the least risky of the cardiac interventions that are available today. This procedure has been available over 5 years now and about 50,000 have been done.

The doctors were willing to do it tomorrow, but Will still has his PEG tube. Although it could be done either before or after PEG-tube removal, if it is done before, Will will have to be on a certain medication for three to six months after the procedure. If it is done after the removal, the use of that medication can be avoided altogether. Will already had an appointment Thursday to decide on the PEG tube, so the procedure will be delayed a couple of days for a decision on that.

Jazz 96, Raptors 79

Will and I went to the Utah Jazz game tonight. From the moment I first mentioned the possibility to him, he was all over the idea. I told him yesterday that if he was too tired at night to go, he didn't have to, but he told me I didn't need to worry about that.

The game was really not that inspiring. Both teams played like the season had already been way too long. The most emotion all night was when a Raptor player got ejected from the game. But it was fun to be with Will, and Will seemed to enjoy himself.

Cruisin' on a Sunday Afternoon

Will attended Church today and enjoyed all three hours of the block. In the evening he accompanied Jessica and Dad as Jess practiced her driving skills. As they drove through the streets of Bountiful Will enjoyed teasing Jess in mock fright as she maneuvered through traffic and mock relief when 3-point turns were successfully completed.

Perfect Scores

Thursday his physical therapist, Marilyn came and found he could stand balanced on one leg for a minute without toppling, and could go up and down on one foot twenty times easily. His walking was very brisk and purposeful. He just needed to work on the heel to toe rotation when he went up and down hills. He got 5 out of 5 on all his physical therapy evaluations.

BLT or Hoagie?

Wednesday Will had Occupational an Speech therapy.

Kellie came with an arm bicycle for him to operate for at least ten minutes. He was able to do this exercise easily. She also had him work on a puzzle and iron a shirt. The shirt ironing left something to be desired, but after fifteen minutes of ironing wrinkles in and out, it was agreed the wrinkles were getting fewer and farther between and the project could wait for another day.

Lindsey, the speech therapist wanted to know what he had had for lunch. He had been given a choice between a bagel and cream cheese, a BLT, and hoagie sandwich. The house was pretty much reeking of bacon, but he insisted he had had a hoagie. The memory needs to be fine-tuned a little, so that has become a priority.

Speech Evaluation

Tuesday found Will demonstrating his eating skills in front of his speech therapist, Lisa. He was very impressive wolfing down a hoagie sandwich, apple, chips and a pop. Lisa’s evaluation of his eating skills was two thumbs up.

Her next evaluation consisted of a wide-ranging battery of tests on everything from tracing geometrical shapes without crossing the line, to reading sentences, writing words, trying to open your eyes while someone’s holding your lids down, coughing, and sticking out your tongue. She took copious notes on her findings and then left him with a number or homework assignments including things like putting together a jig-saw puzzle, biting the tip of his tongue while swallowing with the back part seven times, putting a button in his mouth attached to a string of dental floss and tugging on it while reading the newspaper, saying words that start with the letter “g” while holding a knife under his nose to see if he was leaving film on the knife, reading 10 short sentences focusing on speaking slowly, loudly and over articulating, and finally having a five minute conversation with someone using those same strategies. By the time Lisa left, Will felt like he had gone through boot-camp. Bilbo Baggins in his book “There and Back Again,” had nothing on Will.

Occupational Evaluation

His occupational therapists, Marc and Lori, came in after Michelle. They had Will do a load of laundry. He did a batch of coloreds on hot, which could be interesting. They also wanted to test his use of the telephone and the telephone book so they had him look up yellow cab in the phone book in Bountiful, which doesn’t exactly have a thriving taxi service, but he was able to locate a local cab service anyway. Will won’t be able to drive for a month or two, until they’ve put him through a driver’s training course, so access to a cab could be a need. The phone number they gave him for a theater was out of order, but he wasn’t planning on taking in a movie any time soon, so it was okay.

They asked him what his main goals were. He told them he wanted to be able to talk better and to return to his residency in Ohio. They could tell he was pretty pumped about that and agreed that those were goals they could support and help him with. Marc suggested he do a task like showering or eating, take a nap of 30-45 minutes in length, and then do another task. He also recommended two short 15 minute walks, rather than one 30 minute walk. The goal of breaking out of the Zombie state looms large on the horizon right now.

General Therapist Evaluation

Monday Michelle, a registered nurse, came to our home to have Will fill out a whole battery of state-mandated forms. One look at Will’s signature erased any doubts to whether or not Will was destined to be a doctor. Michelle could recognize that hen-scratching anywhere. Will is the third doctor who has had a stroke that Dr. Edgely has treated.

Michelle said she would talk to Dr. Edgely about getting Will’s peg tube out. The peg tube was inserted in Ohio when it was discovered Will couldn’t eat. No one was counting on a milk-shake and some e-stems to catapult Will’s eating muscles back into full service, except Will. He knew he’d rather be eating a hamburger than being wakened in the night to have a stranger pour mystery liquids into his peg-tube. It’s amazing what the human spirit can achieve given the alternatives.

Church

At church Will was quite the celebrity. He was wearing one of his handsome suits, his best pair of dress shoes and sporting three day’s growth of beard, creating that rugged-doctor look which has so much eye-appeal for the single women of the neighborhood. Unfortunately most of the single women were at the Singles ward, but a most favorable impression was made on the women single or married who where there. It appears they were not expecting to see anyone so healthy and generally altogether looking.

Will attended Elders Quorum, then sat by me in Sunday School. He went to each reference in the scriptures as we discussed it, and when I was called on to read, he lent his scriptures to me since I had not brought my own.

He sang the hymns with energy in sacrament meeting, but then got drowsy about halfway through. He fought it off, but then went to bed as soon as he got home.

Reunion

Saturday night the Provo contingent of Blackhurst sibs arrived just in time for supper. The eyes of the starving students were immediately drawn to the dessert trays lined up along the counter and it wasn’t long before Jarom had sliced off a big piece of German Chocolate Cake and Ike was sampling Summer Clarke’s chocolate chip cookies.

Enter the manly wolfer of all things edible. Will quickly sizes up the situation, sees his younger brothers taking center stage in the eating department and immediately knows this is not to be tolerated. He must not be upstaged by a couple of flunkies. He goes into action, grabbing Jarom’s cake and arm wrestling Ike for the rest of the cookie. Taken off guard, the brothers were left empty handed. It was not to go uncontested. Ike immediately offered to take Will on in an arm wrestle. It was touch and go, but in the end it was declared a tie, though some thought Ike won by a hair’s breadth. Jarom, still smarting from the loss of that big piece of German chocolate cake, challenged Will to another round of arm wrestling.

The sisters, who were trying to be the cheerleading squad, were heard groaning in the background as they watched Will’s struggle for supremacy being put to the ultimate test. It was not a pretty scene as both contestants were determined to prevail. The arms of both brothers were seen pressed almost to the table, but then miraculously righted themselves and continued the match to the death.

Fortunately Nate and Dad walked in with pizzas and bags full of groceries and the contest was suspended, though Jair declared himself ultimate victor. He had given up his cake which he insisted Will finish off before he got a slice of Sister Lauder’s famous Lemon Meringue Pie. Will acquiesced, not because he was willing to admit defeat, but the chance to demonstrate his prowess at finishing off the cake and pie with no problems was not something to thumb your nose at.

The Little Caesar’s pizzas were soon polished off around a dinner table filled with conversations about the times when Will stole Becca’s favorite pair of red shoes and hid them in the attic. Will responded with plans for hopping a plane back to Ohio tomorrow and leaving Becca in the dust. Becca wished she had been left in the dust, or at least at home, as she recalled wearing Ike’s tennie runners to school and Fallon Webber calling it to the attention of the whole class. The subject of shoe wardrobes was continued when it was discovered that it took nearly the bottoms of both sides of the closet to make room for the assortment of casual, dress, semi-casual and doctor shoes that constitute Will’s shoe wardrobe. Imelda Marcos had nothing on Will.

Grandpa and Grandma Andrus and Aunt Mary Anne were totally blown away by how good he looked. Not knowing what they were expecting, it was good to get their initial impressions. Considering all that he has gone through, Will is looking terrific and continues to make good progress.

New Rehab Center

The day after Will's arrival in Utah, he visited the head of the University of Utah Physical Medecine and Rehabilitation Center, Dr. Steven Edgley. We learned just before meeting Dr. Edgley that he had suffered a stroke during his ophthamology residency. The stroke rendered him unable to perform surgery, so he switched to Rehabilitation.

Dr. Edgley seemed very thorough in his prior study of Will's case file and in the questions he asked during the assessment. He asked Will if he wanted to return to his residency. Will vigorously nodded in the affirmative. At the end of the assessment he told Will that based on his good health prior to his stroke, his young age, the considerable progress in recovery he had made in just five weeks, and the fact that it was still early in Will's recovery period, he thought Will's prospects for being able to return to his residency were good.

Goodbyes

Wednesday March 5th was a party day at Riverside Rehab.

All the residents in Will's class plus many members of the faculty and Community Outreach Programs came by to shake Will's hand, wish him well, get their pictures taken with him, and leave him with their blessing and their love. There must have been 50 or more. It was a very emotional day as they spoke of the clinics they had shared together, the times Will had served with them as home teaching companions, or fellow clinicians in cardio or infectious diseases, or been there when they were new at OSU. They spoke candidly on the issue of Will's stroke, his recovery of his ability to eat, and the promising prospects for further and hopefully complete recovery.

In the evening representatives from the Singles Ward came by. Brother Smith, entertained us with his latest trip to Israel–tempting Will's sister Sarah, the anthropology major, with accounts of the ruins of the Masada he had just visited. Doherty came with memories that she and Will shared as two of the senior members of the Singles Ward. Christian Bahr dropped by with promises of visiting Will when he comes to Bountiful after graduation from dental school, and Dave Ricks with promises to welcome him back to the ward when he returns to resume his residency at Riverside. It was a very good day.

Sarah was kept busy taking pictures to document our time here and the people that made it special, so we are including some of them to give you a little insight into Will's world.

Once again, thank you to everyone at Riverside for all you have done, and thank you to all of Will's friends and coworkers for your love and support. We could not have gone through this hard time without you. Thank you.