RECENT EVENTS (News and Events for historical updates)

December 5, 2011

Dad's Update XXII - 12-4-11

Update on last year at CC.

“The LORD is with you, mighty warrior.” (Judges 6:12b)

“Never will I leave you, never will I forsake you” (Hebrews 13:5)

Dearest friends and family,

Please note there is a special painting auction email coming right after this one (Part 2 of 2). Also see video links in next paragragh.

We crossed the 2-year anniversary on August 30th, 2011! Bryce and I flew to Colorado College on that day for his last undergraduate semester, only 6 months behind in his senior year because he cranked straight through the summer to catch up. His advisor said he did so well in his International Political Economy major that he should consider graduate school at Princeton or Harvard! Wow! Bryce has finished all his major credits and only has a few courses remaining to graduate; he will complete coursework in January 2012 and formally graduate in May 2012. We celebrated his success and grit with a drive up Pikes Peak, capturing the event with his best friend, Mike Arnsteen, and getting Bryce up over 14,000 feet for the first time. See this recent 5-minute video at http://vimeo.com/33085227, Finishing Up Strong, for a quick update and his Pikes Peak climb. For the many who missed the 20-minute video of Bryce’s story last June, Perseverance under Pressure, see it at http://vimeo.com/22866712. (If the video stutters, click pause for 10-15 seconds to let the download get ahead, then hit play again. It’s a large HD file.) Bryce composed, produced, and lead the accompanying music as lead guitar in this video.

Sooooo…..where do we go from here?

Denver!

Bryce wants to live in Denver after college. Many of his friends are there, the climate is wonderful and easy on quadriplegics (300 days of sunshine/year), the land is relatively flat, and Craig Hospital (“home base”) is there. His next challenge involves learning how to drive. Craig has a transportation advisory service and offers needed outpatient physical therapy. A myriad of technical details need to be worked out and resolved before he can get behind the wheel in his wheel chair. Once we determine his upper body strength and supplemental equipment needs, we can begin the van ordering process with appropriate electric and electromechanical customization. This process will take 3-6 months. Bryce has done only minimal physical therapy over the past two years while he prioritized his free time completing college coursework, so this will be tough work. The process begins January 2nd with his second Craig re-evaluation! Driving will be the key to really expanding his independence.

Bryce currently envisions staying in Denver for at least 1-2 years, then applying to international relations/law graduate school. Depending on scholarship and financial aid, he may come east for graduate school, but Denver University has attractive degrees too. Washington D.C. is also on his radar. I already call him “Ironsides” after Perry Mason in that classic TV show from yesteryear. Bryce has an amazing ability to listen intently, process, and speak quite deliberately – drives old Dad crazy with incisive questions!

Medical Progress

Medically, Bryce is doing quite well. He pushes his manual wheelchair, E-motion assisted, around quite easily now and prefers to stay out of the motor chair. Arm movements have strengthened to the point that he can eat meals with normal utensils with minimum “distraction.” Even though his fingers still don’t move, he now writes with a special hand tool and takes essay exams with other students. His skin issues have largely been subdued through prudent care and movement techniques. His biggest challenge continues to be recurrent bladder infections, typical for quads and paras, which keep coming back too often. Being on antibiotics makes him feel sick and sometimes he gets autonomic dysreflexia (“AD”), which involves blocked body messages to the brain causing auto-reflex response actions such as high blood pressure, increased heart rate, and sweats; the events can be scary and potentially dangerous situations. Overall, he has been blessed with remarkably good health and has slogged through the AD bouts.

Keefe?

Some of you have asked about Keefe? After Keefe won the New England crew championship with The Kent School (2nd boat) last summer, and pushed Dad like a mule up Mt. Chicora and Mt. Lafayette in New Hampshire’s White Mountains, we dropped him off at The Naval Academy on June 30th for Induction Day. His golden locks were shaved off, and we watched Keefe, with honor and excitement, move on to a life of United States military service. Somehow he made it through plebe summer in Maryland’s hottest summer on record and is currently grinding through 7 fall courses, memorizing loads of information under pressure, and rowing in the Freshman crew program. He just loves it!

February 6, 2011

Dad's Update XXI - 4/11

Christmas, Craig reevaluation, and Back to CC

“Be strong and very courageous. ..…Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” (Joshua 1:7a,9)

Dearest friends and family,

It is amazing how quickly time has passed since my last update in November – we are over a year and a half into our new lives. It’s Passover (Good Friday)/Easter, a time for new life, forgiveness, and hope. I recently returned from a month in Colorado. What a joy to depart knowing Bryce is healthy and well, having dictated a 40-page independent project, hitting on all cylinders. Here’s our latest news…

Christmas in CT

On December 23rd, Bryce returned home to his Mom’s house at Taft in Watertown, CT and stayed for 3 weeks. He had a nice quiet time catching up with friends and family. Keefer brought him down to New Canaan to see Meg and I for a day, but we couldn’t get him into our house - doors too narrow and steps too steep and dangerous! Details Watson, details! We reached out last minute to our good friends Bob and Carol Oram, who invited us over to their house for fellowship and football. We followed up with dinner at the Knechtle’s, our friends and the pastor of Grace Community Church of New Canaan, rounding out a wonderful day together. During Bryce’s time in Connecticut, freezing and sequestered inside through the harsh northeast record snowstorms, he firmed up a desire to remain in Colorado after graduation in December 2011. It’s easier to live there as a person with physical challenges: 300 days of sunshine per year, mild weather on average, lots of recreational therapy programming through Denver’s Craig Hospital alumni, and a big city in which to begin his new life after college.

Re-evaluation at Craig Hospital

Dad and Bryce traveled to Colorado in early January for Bryce’s first annual week-long re-evaluation at Craig Hospital in Denver. After seamless travel (we are getting smarter and more skilled at this), we spent a week in Craig’s specialized out-patient housing. He was exhausted after a week of various tests, but they were impressed with how well he is doing, physically, mentally, and academically, relative to others at the same stage. He has also progressed to C5/6 from C6/4 (still Asia A-Complete), which means more arm strength and capability (but still no fingers). However, we were surprised at the weakness of his upper back muscles, which have deteriorated from lack of use, despite pushing around his E-Motion-assisted manual chair since last summer. He has not kept a consistent physical therapy regiment given his school course workload, which also sets him back temporarily from independent driving. In addition to the challenges of ordering and customizing a van, Bryce must seriously prepare physically not only to have the basic strength to turn the wheel, but also to push two customized bars for brakes and acceleration. If he can’t, we will have to add customized electronic controls to accomplish the same purpose. Driving is much more complicated than we thought and will take time and focus after he graduates from Colorado College. The good news is that he should be able to drive. We are learning that everything takes longer in the “new normal.” We will get there. As Churchill said, “never, never, never give up!”

Return to Colorado College

Bryce was happy to be back in his “own” room, visit with his friends, and see his buddies from Colorado College’s Security department right next door. He settled down into the block program grind (intensive sequential courses of 3.5 weeks), completing several additional courses, including a course on the Middle East and an independent comparative politics thesis. Our new friend, Sylvie Fadrhonc, offered enthusiastically to shepherd Bryce through a special skiing program at Telluride in March, but Bryce couldn’t find the time and also remains hesitant to return to the slopes until he gains more strength and independence. That day will come. Bryce will continue straight through summer classes, take a few weeks off in August to come home to CT, then return to Colorado to push to graduate by December with a BA in International Political Economy. This would be Bryce’s senior year so most of his friends are graduating this spring. He currently plans to establish himself as independently as possible in Denver in early 2012, and consider graduate school in a few years. His long-term goals are still coming into focus. At this stage, a few years in Denver, then graduate school, either in Denver (DU?) or east (Georgetown?). One step at a time……

Next Steps

With Bryce planning to stay in Denver, that presents a myriad of challenges for him and for us. After scanning the real estate market for a month in Colorado Springs and Denver, Meg and I continue to discuss how and when to move out there to offer him back up support, “safety,” and encouragement. He will need help establishing himself in an apartment, whether aligned with us, or with roommates, or alone. We will need to coordinate shifts in Medicaid, insurance, and nursing aide care. Additionally, he will need to step up physical therapy and driving training and we will look to order a customized van as his strength and capabilities become clearer. Bryce is thinking about possibly having a “service dog” as a companion and helper. 2012 looks like it will be full of more learning experiences. As always, we “strive for independence” in everything we do. I have the flexibility in my current enterprise credit risk management role at BAML to work anywhere in the country; that flexibility has already helped significantly and will continue to do so, although my heart yearns to be back in the investment management world.

Perspective

It has been a wild ride of uneven turns, emotional mountains to climb and descend, delays, exhaustion, and hard work, yet we are thankful to the Lord for life, health, and Bryce’s courage and vigor. Now that life is relatively stable and “new normalizing,” it is easy to forget how hard things were a year ago and to deny the enormity of Bryce’s remaining challenges. We just take each day and each month, step-by-step, doing the best we can. At this Easter time, we thank God for His love and provision. No matter how hard the road, we will continue to have hope – a hope refined in the fire of life’s challenges. We are amazed and overjoyed at how courageous and focused Bryce has been; how he has risen with great courage to the challenge before him. Yes, he has bouts of depression and anger; that is absolutely normal under the circumstances. But, he continues to move forward, persevering under pressure, to find the path that God has laid out for him.

May God bless each of you for your love, prayer, and support for Bryce and our family. There is absolutely no way we can write enough timely thank you notes to match how grateful we are for your blessings in our time of need. This Easter, we pray that God might help each of you in the same way He has helped us, to get through whatever valley you may be experiencing.

Thank you friends and family.

In Christ alone, we depend,

John & Meg

Video link below on Vimeo.com – “Bryce Rafferty - Perseverance under Pressure”

http://vimeo.com/22866712

Hint: If the video stutters, click pause for 10-15 seconds to let the download get ahead, then hit play again. It’s a large HD file.

August 25, 2010

Dad's Update XIX - 8/24/10

Return to College!

 “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.” (James 1:2-4)

It has been a challenging time since my last update. We approach the one year anniversary of Bryce’s accident in Switzerland on August 30th. We have been emotionally distraught, carried lots of stress, debated on multiple levels, and experienced outright depression, but sense a strengthening. As we slowly gain our lives back, we have had to die to self and call out for the Lord's help…….

Bryce Update:

Bryce struggled with the challenge of settling in at home in June and July after a busy May with lots of activity and visitors. He had to deal with a myriad of emotions, doubts, fears, and the transitional phases of his paralysis. Bryce also had frequent physical struggles with autonomic dysreflexia. Initially we couldn’t figure out. The solution (which our friends at the SPZ in Switzerland warned us to always do) was a final specific position check once in the wheelchair. Somehow we all forgot! Since figuring this out, Bryce has felt much stronger and his travel ability is increasing.

Bryce has attended physical therapy 3 days/week and other activities (fundraisers in NYC & Brookfield, sailing in Newport, driving with Dad, visits to Grandmas). His Mom, Jennifer, did a super job taking care of him at her home, supported by wonderful home health aides provided through Medicaid. He adjusted well, strengthened his arms, and weathered emotional storms, learning a lot more about himself and life in the process. Bryce also completed a tough summer school graduate course on Latin American politics, writing multiple papers through dictation, and receiving A grades in the process. Incredible! He really enjoyed it, can’t stop talking politics, and is looking forward to returning to school. While his fingers have not come back, both arms have strengthened nicely, he can eat fairly independently, and he can work his laptop. Early this summer, wheeling the manual chair slightly uphill to the end of the driveway was a dream, but a week ago, he did it all by himself. This past weekend he received new power assist wheels for his manual chair that increase his mobility and will help him strengthen his arms further. He leaves home with a toe infection and a toenail removed, but antibiotics should clear him up this week.

Back to Colorado College!

Two weekends ago, we packed a POD container and sent it off to Colorado Springs. It arrives tomorrow, Bryce flies back to Colorado Collge with his Mom this Thursday, then I fly out for a month on the 29th to be backup support after his Mom leaves on the 30th. I will have an apartment at Colorado College and will be working out of a local Bank of America Merrill Lynch office during the week in downtown Colorado Springs. I look forward to catching up with all my new friends in Colorado while out there. Meg will hopefully be able to fly out to be with me if her INR blood levels are approved by her docter. She is doing well and the remaining blood clot in her left thigh has decreased by 50%. Even her vascular surgeon seemed surprised! We attribute this progress to the many prayers of the prayer chain.

Other:

Keefe worked as an administrator at Middlebury College’s language program in July and spent much of August with Meg and me in New Canaan training single sculls under a Russian coach in Greenwich. Keefe and I also camped in the Whites and climbed Mt. Washington's Huntington Ravine, finishing in terror from a sudden rainstorm, but surviving, thank God. Like his brother did last year, Keefe trashed me in “King of the Raft” at morning dip on a local lake; Dad’s glory days are over! In September, Keefe attends The Kent School as a U.S. Naval Academy Foundation sponsored postgraduate and will participate in the basketball and crew programs prior to Plebe summer in 2011. Kent’s crew team was national champion last year.

Thank you for all your support and prayers. If you have received this email indirectly, please contact me and I can add you to our direct list. I am amazed at how little time I have now that I'm working again and am especially grateful to be employed in this economy. I enjoy the people I work with in the Enterprise Credit Risk Group at Bank of America Merrill Lynch and am focused on identifying emerging portfolio risks in EMEA and reviewing credit underwriting and risk assessment in various global specialized industries. The first test of my new job's flexibility occurs in September while I am in Colorado. Please feel free to call or e-mail me anytime at the contact information below.

A few recent pictures are attached.

Blessings to you in Christ,

John (Dad)

John P. Rafferty

203.606.6354

[email protected]

For further reflection…….

In April, Joni Earekson Tada lovingly autographed and sent Bryce her book, When God Weeps. It’s another great book on suffering in addition to her great book on the same topic, A Step Further. For those of you out there who may be suffering, some of the following passages may offer encouragement and hope, as they did in my heart.

The Cross p.136

A miraculous exchange happens at the cross. When suffering forces us to our knees at the foot of Cavalry, we die to self. We cannot kneel there for long without releasing our pride and anger, unclasping our dreams and desires - this is what "coming to the cross" is all about. In exchange, God imparts power and implants new and lasting hope. We rise, renewed. His yoke becomes easy; his burden light. But just when we begin to become a tad self-sufficient, suffering presses harder. And so, we seek the cross again, mortifying the martyr in us, destroying the self-display. The transaction is then able to continue. God reveals more of his love, more of his power and peace as we hold fast the cross of suffering.

Anger p.152

Anger has a dark side too. It has incredible potential to destroy. It digresses into a black energy that demands immediate release and relief. It despises being vulnerable and helpless. It relishes staying in control. It loathes dependence on God and so gains macabre pleasure in spreading the poison of mistrust. Ironically, this sort of anger - unrighteous anger - turns on us. It is a liar, offering us satisfaction, when in truth it guts us and leaves us empty......Unrighteous anger - anger that leads us away from God - sucks the last vestige of hope from our hearts. We stop caring, stop feeling. We commit a silent suicide of the soul, and sullen despair moves in like a terrible dead fog, deadening our hearts to the hope that we will ever be rescued, redeemed, and happy again.

Hope p.154

Suddenly I realized, I am feeling something. Like a hibernating animal walking up, I felt something stir. No more emotional numbness. Instead, a magnetic pull toward hope. In the darkness, I found myself saying out loud, "God, if I can't die, please show me how to live." It was short, to the point, but it left the door open for Him to respond. Little did I realize that He would: "the Lord is close to the brokenhearted and saves those who are crushed in Spirit." Psalm 34:18.

May 10, 2010

Dad's Update XVIII - 5/9/10

Coming Home to CT.

But the Lord said to Ananias, “Go! This man is my chosen instrument to carry my name before the Gentiles and their kings and before the people of Israel. I will show him how much he must suffer for my name.” (Acts 9:15-16)

Dear friends and family-

I saw the above quote the other day about Saul (Paul) and it inspired me back to the truth; that what seems so bad can always be turned into such good, if God be in it. We hope and carry on……

It has been over a month since my last update…….blame it on work! Time seems much shorter these days, but it is good to be working again. I spent three days out in Denver at Craig Hospital in Denver a week ago, learning how to change a catheter, perform PT and OT therapies, operate transfer equipment, bring Bryce up and down stairs in the manual wheelchair, learn van purchase details, etc., etc. Bryce has a super relationship with all the doctors, nurses, and techs at Craig and has made lots of new friends. Craig is a great place with wonderfully positive, informal, energetic and highly professional staff. We will all miss them. It was a busy few days, but I had the chance to bring Bryce out to a fine Italian restaurant nearby for a super dinner with fresh veggies on the last night. Dad had his beloved veal cutlets. After 4 months of American cafeteria food, that SPZ Swiss food seems like a fond memory to Bryce now!

Bryce is READY to come home after 8 months in two hospital/rehab facilities! He flies home with Mom this Thursday, May 6th in time to celebrate his 21st birthday on May 7th. He is working off a particular anti-spasm medication in order to enjoy that first legal Scotch and/or beer!

He will be home all summer in Watertown, CT. His cell number is 203-232-2705 and email is [email protected]. He will return to Colorado College in late August and have a short 6 month reevaluation at Craig shortly thereafter. The real life rehabilitation is just beginning, but he is ready with face forward! While we will all have inevitable low points this year, we will get through this together….with prayer, with the Lord’s help, and with friends and family like you.

Medical update

Bryce is doing very well overall and passed through the 3rd and final Craig team meeting with flying colors. His left arm is still catching up, but it will take months to get the left bicep stronger. The good news is he can push his manual chair a little; that will only get better. His challenge is to be patient and not overdo it; after many dormant months, the muscles require slow strengthening to avoid bone joint and tendon damage. Bryce continues to manage his weight shifts well (to avoid skin damage), frequently leaning his power chair back and forth. This is how quads shift their weight versus paras who can use their arms to do so. He also can go 6.5 hours through the night without an assisted turn because of his good skin condition. The shift to Craig and the spinal surgery were the right decisions. He has been well cared for and trained thoroughly. We look back and realize how fortunate he has been to have excellent care and support at world class facilities: the Swiss Paraplegic Center and Craig Hospital. Thanks also go to AIG/Chartis and Connecticare for their solid insurance support through these difficult months of surgeries and rehabilitation, and to the Taft family for their incredible guidance, support, and deliberation with Jennifer’ home remodeling.

Bryce’s only significant challenge has been periodic weekly bouts of “AD” (autonomic dysreflexia). AD is a “new normal” challenge for quads. The disconnect between the brain and the spinal cord at the injury level results in blood pressure and heartbeat swings, typically related to bladder or bowel issues, but often related to “hard-to-discern” other issues (something going on which can’t be sufficiently communicated by normal spinal cord to brain communications). As a quad, Bryce can’t sweat anymore (Dad has lost a Varsity partner in that!) so the symptoms of his AD, other than blood pressure and pulse, typically include flushed face, chest rash, dizziness, or general feeling of malaise. We will all get smarter and more comfortable with this challenge over time, but the bouts are quite disconcerting. Spasms seem to be getting better over time.

Next Steps

With the end of acute rehabilitation, we pass into a new stage not fully covered by insurance. Bryce will continue with PT a few days a week up in New Britain, CT while living at home. He will have home health aides help him to get up, showered, and dressed each day. Our initial estimates of his daily nurse aide costs approximate $50-75,000/year. We are close to gaining approval from SSI/Medicaid for health insurance coverage for such care, but at some point as he begins to earn his own way after college, such coverage will fall away quickly. It also may get complicated shuttling back and forth between Connecticut and Colorado. For this reason, we continue to work on fundraising initiatives. We have a fundraising advisory Board conference call next week to trade ideas and coordinate activities. Anyone interested in serving who I have not already contacted, please let me know. The Special Needs Trust is in final draft form and Jennifer is beginning to explore a future Foundation concept.

The NYC jazz music fundraiser at the Frying Pan Pier 66 is still on for Sunday, May 16th @ 6pm-10pm. It will include 5-6 musical performing artists, be lots of fun, and BRYCE WILL BE THERE. Apparently there is also a comedian performer who performed on the David Letterman show. Only $25/person, but with the option to give more. For more information and to register, please see the following link:

http://benefitforbryce.eventbrite.com

benefitforbryce.eventbrite.com

We also are looking for a “corporate” sponsor to cover up to $2,500 of the initial set-up costs. Please contact Amanda Spears at 908-612-4726 or email her at [email protected] if you feel called to help with that.

That’s all for now, stay tuned and feel free to give Bryce a call or email once he is home again. He will need to practice external communications!

Blessings to all and thank you for your continued love and support.

With warm thanks, in Him,

John

March 26, 2010

Dad's Update XVII - 3/26/10

Post spinal cord surgery - March 2010

How great is your goodness, which you have stored up for those who fear you, which you bestow in the sight of men on those who take refuge in you. (Psalm 31:19)

Dear friends and family-

From the sun of the Colorado high plains (two weeks ago) to destructive winds in Fairfield County, CT and heavy rain from the Atlantic in Orleans, MA, much has happened over the past three weeks…..and we have much to be thankful for…..

Bryce medical update

Bryce is recovering strongly from his highly successful spinal cord surgery. His decision to go ahead with the spinal surgery was the right one. After a challenging week of lying flat on his back, and withstanding substantial neck pain, Bryce returned to his wheel chair and physical therapy. Finger sensations appropriate to the C6 level have emerged, but it is too early to tell how much movement will come back. The left arm and bicep, along with the right arm, have strengthened further allowing Bryce to push himself in his manual chair about 20 feet last week. Hypersensitivity in the left shoulder and arm disappeared, increasing his left arm range of motion considerably. While Bryce suffered increased spasms post operation, we expect these to dissipate over time. What a huge blessing and significant encouragement toward enhanced strength, functionality, and perhaps even driving ability going forward! Thank you Lord and thank you Dr. Falci!

Last Thursday, we had our second Craig team meeting. It was a very positive report! Overall, Bryce is doing quite well with stable reports regarding pulmonary, nutrition, bladder/bowel, blood, and skin functions. He can now tolerate 8 hours sitting in his chair without skin issues, perhaps reaching up to 12 hours in time. PT training will ramp up over his final month including the FES bike, standing therapy, a manual chair class called “Wheelers,” pool therapy (after his neck staples are removed), and a class called EFIT for strengthening his upper body. Psychologically, he is doing very well – willingly adjusting to his new physical situation. He has set high goals on recovering more “para-like” abilities through aggressive rehabilitation. Full testing will be done again at the end of his Craig program.

Return home to Connecticut

We expected Bryce to return home the last week of April (week of 4/26) when his Craig rehabilitation is over, but Jennifer’s Watertown, CT home remodeling is delayed into early-to-mid-May. We are exploring interim housing solutions in both Connecticut and Colorado, but hope he will be back by his 21st birthday on May 7th. Thank you to The Taft School “family” for driving those renovations and to Beth Harrington-Howes for consultative design help! Bryce will remain home for the summer, but intends to return to Colorado College in late August to compete his junior year. In the meantime, we are coordinating planning details weekly with Craig to prepare for Bryce’s home care (equipment, bed, health supplies, nursing care, home health aides). While insurance will cover most of the initial costs of this transition, we will begin to depend more on Medicaid coverage and outside fundraising monies once he is home.

Communications

Bryce is up and running with Bluetooth software and an earpiece that enables him to initiate and receive telephone calls as well as use dictation software through his computer (Facebook, emails, and general writing). However, the process takes practice and with ramped up therapies, his free time has shortened during the week. Best time to reach Bryce is at night or on the weekend, but often his CC friends pop in to see him then. Bryce reads his emails and Facebook posts; unfortunately getting responses from him on a timely basis may need to wait until he is home. His cell number is 203-232-2705 and email is [email protected]. Room 328 in Craig’s East Wing for those who want to visit.

Dad has new job with flexibility

While I was networking out in Denver, meeting some wonderful new contacts, I received a Risk Management/Credit Review job offer from Bank of America and decided to accept it for its high intellectual curiosity quotient (risk management/loan and portfolio review of the inherited Merrill EMEA portfolio (Europe, Middle East, Africa), flexibility (can ultimately live anywhere in the country), and the chance to work at a lead corporate bank. It rounds out my credit experience to include enterprise risk management while offering me needed flexibility to make critical Bryce-related decisions and actions. I am very excited to be back working again and start next Monday, March 29th. My office is located one block from Grand Central in New York City. I am deeply grateful for all the prayers on my behalf for employment. This is truly yet another wonderful answer to our prayers.

Fundraising

Amanda Spears, a Dale Carnegie coach and friend, is organizing a NYC fundraiser at The Frying Pan, Pier 66 for Sunday evening, May 16th. It will involve various musical performances by gifted musicians. More detail to come, but for those interested, please mark the date. I’ll be giving a talk and with some luck, we will have Bryce there too.

I have a Colorado attorney drafting a new Special Needs Trust that should be up and running within a few weeks. We plan to continue using both the new SNT trust and existing NTAF trust going forward. I also hope to establish a fundraising committee with friends and family to provide coordinated guidance. We anticipate a number of fundraisers through the remainder of the year.

We really appreciate all your emails, prayers, calls, and reminders; they have kept our spirits up and our faces forward. Please pray for Bryce’s continued strengthening, for all the return planning details to fall into place, for good fundraising communication and collaboration, and for easy assimilation into my new job.

Finally, more pictures have been posted to the NTAF site. These were taken right before the recent surgery, then the week after surgery. The site is: http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/815E84D4-9B4D-12A9-3B8B55A769EC3F1C

In Him,

John

March 4, 2010

Dad's Update XVI-b - 3/2/10

Post spinal cord surgery update

Dear friends and family:

From the fullness of his grace we have all received one blessing after another. (John 1:16)

The actual surgery was highly successful and lasted about 7 hours without complications. Upon un-tethering of the spinal cord (freeing it from being stuck to the sidewall by the scar tissue), the large cyst collapsed, thereby freeing up cord movement. This precluded the need for a more intensive shunt tube drainage process. The spinal cord normally moves up and down with each heartbeat so this development really made a big difference and gives us strong hope for some new functional improvement.

Bryce returned to his Craig room last night, well attended by tech assistants and nurses and supported by various ICU-like monitoring equipment. Almost felt like being home, rather than being in an ICU. While he didn’t sleep much because of neck pain, we were greeted by great news this morning! As I was itching his arms, he noticed that his left shoulder and arm hypersensitivity had disappeared and he was actually feeling sensations in his fingers. The left biceps seemed stronger too. Such rapid recovery is really exciting and encouraging.

Bryce will be in bed for the next 5-7 days to help with post-surgical spinal cord healing. By this weekend, he will be more communicable. He has been tough through the initial recovery, battling through without much complaining. With 5 serious surgeries over the past year, Bryce now has earned a Varsity letter in Pain Management – Tough!

In the meantime, we ask for those who are praying to continue doing so as his healing progresses. Thank you for all that coverage! We are still hoping for more complete left arm recovery and now perhaps even some fingers and/or other capabilities? More feedback from doctors will come as we move into next week. Time will tell as we wait on the Lord’s grace…..

I have a very busy calendar out here in Denver through next week, so forgive me for delayed communications.

Bryce’s webpage: http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/815E84D4-9B4D-12A9-3B8B55A769EC3F1C

In Him,

John

March 2, 2010

Dad's Update XVI - 3/1/10

Craig rehab and pre-4th surgery update 3-1-10

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."(Joshua 1:9)

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. (Mark 11:24)

Arrived in Denver and enjoyed attending physical therapy, occupational therapy, and SCI lifestyle classes with Bryce today. He has gained strength over the last several weeks and looks and sounds great. Even the left arm has started coming back, AGAIN!

Tomorrow, March 2nd at 7:30am is his spinal cord surgery with Dr. Falci, which should last about 6-8 hours. The purpose is to drain the cyst that has grown above his injury and to “untether the cord.” The doctors believe scar tissue and tethering to be the primary reason for Bryce’s left arm functionality loss. Perhaps he will also gain back even more functionality from the surgery.

Please pray for recovery of the left arm, further functionality improvement overall, the absence of any complications, and rapid recovery. Also, please pray for his confidence and faith during this difficult 4th return to the operating table and for the doctors and nurses to be filled with the Lord’s spirit in everything they do. While this is a very serious operation, Dr.Falci has performed over 800 similar operations and brings decades of spinal cord surgery experience to the table. We are trusting that God’s hand is in all of this.

I am in Denver with Bryce until March 13th and will send another post surgery update later in the week. Thanks for all your prayers. Just posted a few extra pictures posted to NTAF site from today’s activities.

In Him,

John

January 15, 2010

Dad's Update XIV - 1/15/10

14th update and move back to U.S.

Dear friends and family-

Wait for the LORD; be strong and take heart and wait for the LORD. (Psalm 27:14)

Bryce had a big setback this week as much of the recovery he has gained in his left arm dissipated abruptly for no known reason. Even after a week, the doctors are still having trouble figuring out what happened. We all are upset by this development, particularly Bryce who has worked so hard over the past several months and experienced too many significant setbacks. So we have to wait, AGAIN, and maintain our faith……

Back to the USA:

Bryce is returning to the U.S. on Monday, January 18th (Lufthanza Flight 446, Frankfurt-Denver, arriving at 3:45pm). I fly over to Switzerland this evening and return with Bryce directly to Denver where he will enter Craig Hospital for a few months of additional rehabilitation. I will spend the first week with him, then fly to Miami for the annual Private Placement convention, returning home late on the 27th. Bryce is looking forward to coming home to the U.S. and being near his Colorado College classmates (45 minutes away in Colorado Springs.) Once Bryce is state side, communications directly with him will improve dramatically; he is learning to use his new voice activated computer software.

Bryce:

Nigel, a wonderful new friend from the International Church of Luzern (“ICL”) recently brought bagels, cream cheese, and a TOASTER to Bryce. Bryce devoured them, claiming that the Swiss had never heard of them, then proceeded to “proselytize” and “spread the good cheese” to others at the SPZ, converting many young nurses. Nigel also brought movies on DVD and potato chips. A few women from ICL brought maple syrup and mac & cheese which energized Bryce for the final two week rehabilitation stretch. Thank you so much dear brothers and sisters in Christ!

Bryce swam for the first time in SPZ’s indoor pool, practicing elementary backstroke, floating, turning upside down, and generally enjoying the experience. This was a big success as he did not have any panic or negative psychological reactions being in the water. His neck brace was removed before Christmas, giving Bryce much more flexibility for intensive therapies and clearing the way for a Lake Luzern cruise trip with Mom and Keefe as well as a visit to the top of Mt. Pilatus (see NTAF webpage or Facebook for pictures). Bryce will leave Switzerland in a new manual wheelchair, (which looks much better compared to an electric wheelchair, but will require some hard work to move as he is early on in advanced physical therapies.)

We all have new perspectives since the accident. Bryce recently told us what we have already been experiencing as well – that he now sees the person before the wheelchair. Before the accident, we all saw the wheelchair before the person; a subtle, but powerful change in perspective. We now make eye contact, smile, and reach out to people in wheelchairs. We can’t go anywhere anymore without noticing what is wheelchair accessible and what is not.

Back at the Ranch:

Meg and I had a tough Christmas season, missing both boys who were over in Switzerland, and experienced a few challenging intercontinental communication glitches. However, we weathered through them and have improved communications now that Bryce’s Mom, Jennifer, is back in the U.S. In fact, we just crossed a new milestone – having a pleasant dinner with Jennifer at her home. We look forward to more friendly interactions and cooperation going forward. Meg’s recovery from her blood clot surgeries continues to go well.

Meanwhile, The Naval Academy is sponsoring Keefe for a postgraduate year at The Kent School in Kent, CT, a perennial crew powerhouse. We are all very excited about this new opportunity for him to attend Kent, Plebe summer of 2011, and ultimately serve his country.

Bryce’s first fundraiser of 2010 gets off the ground on January 30th. A couple of my former fraternity brothers are sponsoring a beer-pong tournament at Trinity College in Bryce’s honor. Openings are still available – flyer attached.

Prayer:

Please pray for traveling safety, for continued good health, and for the transition to go well. Also, please pray for Bryce’s doctors in Switzerland and Colorado to determine what the left arm issues are and that it stabilizes and recovers strength and sensitivity again. While we recently saw some triceps activity, it remains sporadic and inconsistent. Pray that Bryce will maintain a positive and hopeful attitude and wait on the Lord’s timing.

Thank you so much for your continued interest, prayers, encouragement, and love.

In Him,

John

P.S. If you have missed an update or would like to view pictures, please visit Bryce’s NTAF webpage. It also has links to his blogspot and Facebook.

Bryce’s NTAF webpage:

http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/815E84D4-9B4D-12A9-3B8B55A769EC3F1C

November 29, 2009

Dad's Update XII - 11/28/09

Ongoing Update

 Give thanks in all circumstances, for this is God’s will for you in Christ Jesus. (1 Thessalonians 5:18)

Having re-read some materials this week about the Pilgrim’s thanking God as the foundation for the original Thanksgiving, we thank Him and ALL OF YOU for your prayers and support during this very challenging time for our family.  Friends and strangers, old and young, have come to support us from far and wide; what a blessing on this Thanksgiving for which we are deeply thankful.

Bryce continues to make slow, but steady progress.  He can now sit up in his wheelchair without support and spend longer times in it as his body systems are normalizing.  His left arm continues to strengthen, but has been inhibited by a pesky deltoid muscle that remains disengaged from the healing process.  Please pray for all those left arm muscles to fall into line! The fingers remain quiet so far, but we continue to pray and hope for recovery there too.  Bryce’s mind and confidence are strengthening with the physical improvements and with time in rehab.   The International Church of Luzern supplied a wonderful turkey meal for Bryce, Jennifer, Aunt Leslie, and Cousin Emily at the SPZ, shared by his doctor and various other caregivers.  What a special treat and a great exhibition of the family of Christ in action!

Meg is slowly getting back on her feet, improving day by day, and gradually returning from a rather patriotic blend of skin colors to a more normal Caucasian hue.  Meg deflected my aggressive “boot-camp” exercise suggestions in favor of more “slow & steady” steps.  Megan, a Physician Assistant from Norwalk Hospital, intervened nicely yesterday with balanced counsel.  Another angel to the rescue!  Meg had three surgeries in three days; surgery #2 involved angioplasty to open up a narrowed vein and insertion of a stent in the iliac kink (May Thurner Syndrome).  A clot remains in her left leg down near the knee.  We hope that six months of Coumadin blood thinner treatment will dissipate it.  She is wearing what she calls her “Ruth Buzzi” stockings, as prescribed for the next year.

Keefer returned glowing from a second visit to the Naval Academy and continues through the Congressional nomination interview process; next interview is with Congressman Murphy.  His thumb injury has healed and he has been cleared to play Varsity basketball.  He spent Thanksgiving recovering from the extraction of all four wisdom teeth.

I will be traveling to Switzerland next Saturday, December 5th to Monday, December 14th (by way of Craig in Denver and Shepherd in Atlanta) to see Bryce and have final discussions with all parties to determine when and where Bryce will return to the U.S.  Insurance company disagreements were rectified this past week, after much hassle over the last few months, paving the way for our decision-making.  Meg’s surgeon has grounded her so she will remain home for safety reasons.

For updated pictures on the NTAF website and new details from Bryce’s blogspot, see link below which links to the blogspot.

http://www.transplantfund.org/find-a-patient/profile/index.cfm/patient/815E84D4-9B4D-12A9-3B8B55A769EC3F1C

We hope you all had a lovely and blessed Thanksgiving.  We are eternally grateful for you and all your prayers.

In Him,

John

October 25, 2009

Dad's Update X - 10/25/09

Ongoing update and launch of NTAF site

 “Because he loves me,” says the Lord, “I will rescue him;

I will protect him, for he acknowledges my name.

He will call upon me, and I will answer him;

I will be with him in trouble, I will deliver him and honor him.

With long life will I satisfy him and show him my salvation. (Psalm 91:14-16)

My hope provides me with a spur to help me run this race;

I know my tears will turn to joy, the day I see His face,

The day I see His face. (Keith Getty and Richard Creighton)

Dear friends and family:

The dust is settling……Bryce is out of the ICU and over two weeks into acute rehabilitation therapies. He is now off the ventilators and invasive respiratory therapy, the trachea hole has been closed up, and pneumonia issues are cleared. He is comfortably settling into the in-patient rehabilitation ward. When he first emerged into the sunlight, he quipped, “I’ve been in the darkness of ICU for too long…..like emerging from….like Charlton Heston emerging from the mines!!” While he is physically much stronger and looks better with increasing neck mobility, Bryce continues to grieve the loss of much of his body and all the things he loved to do. He also continues to have periodic minor issues with temperature, blood pressure, infections, and pressure sores. Bryce’s thoughts are beginning to shift forward toward getting back to the U.S. and Colorado College, back to his beloved Rockies, classmates, sunshine, and ENGLISH-SPEAKING friends. The Swiss Paraplegic Center has been great, but home is beginning to beckon in his heart.

Medical Perspective

Bryce is classified as a C6 incomplete injury in SCI language, otherwise known as a “quadriplegic” or “tetraplegic.” While each person’s recovery is unique and we should see meaningful improvement over 6-9 months, rehabilitation will be an expensive lifetime process and he will probably always need some personal care assistance. In addition to these challenges, he will have periodic medical complications common to those with spinal cord injuries. Currently, he remains paralyzed from the chest down with partial use of his right arm and only limited use of his left arm. Motor functionality in his left arm was lost during the bout with pneumonia. The doctors assure us that the left arm will recover over time, but it is excruciatingly difficult to trust and wait on the Lord as rehabilitation would be so much better with it. While his right arm biceps are working well, along with wrist and forearm functionality, triceps in both arms remain unavailable, thereby limiting manual wheelchair capability. Use of his fingers remains limited. This is the reality of Bryce’s “new normal”…... at least for now.

We remain hopeful and continue to pray for additional healing and motor functionality. Nothing is impossible with God, and we are early on in the process waiting for the spinal cord lesion to fully heal. Further neurological analysis over the next few weeks will shed additional light on the “completeness” of his injury. Healing to the C7 or C8 classification would add significant levels of independence through additional arm (triceps) and finger movement (for those medically interested, see attached SCI - C6 chart). Pragmatically, we should not expect trunk and leg recovery, yet we continue to pray and hope that it would be God’s will for more significant recovery.

Financial Perspective

Bryce’s financial needs will be substantial for the rest of his life. SCI industry materials suggest significant costs, likely well over $1.0+ million. Insurance should cover the next 4-7 months of rehab in Switzerland and a portion of rehab in the U.S. should we bring him back early. We encourage our friends to be proactive on fundraising events for Bryce. We will need all the help we can get.

To help with these and other expenses a fundraising campaign in Bryce’s honor has been established with the Catastrophic Injury Program of the National Transplant Assistance Fund (NTAF). NTAF is a nonprofit that has been assisting the transplant community with fundraising for over 26 years. In 2000, they expanded their mission to include patients who had sustained spinal cord or catastrophic injuries. Contributions are tax-deductible, qualify for matching gifts, and are administered by NTAF for injury-related expenses only. The NTAF has a website (www.transplantfund.org) that facilitates central information exchange, contributions, comments from friends and family, and pictures. Once on the site, simply search for patient “Rafferty” and you will find his NTAF webpage. Other links to his personal blogspot (www.brycerafferty.blogspot.com), Facebook, downloadable flyer, and fundraising tips are available. Rebecca Carr (800-642-8399; [email protected]) is our personal consultant who can help answer questions and help volunteers with fundraising ideas, letters, and flyers. Donated funds “in honor of Bryce Rafferty,” will be used for qualified medical expenses uncovered by insurance or government programs.

We are also reviewing longer-term support mechanisms for those considering additional or more sizable capital contributions in the future. For those interested in leading fundraising events or contemplating significant long-term foundational support, please call us (John Rafferty - 203.606.6354 / Meg Rafferty - 203.722.8045).

Bryce’s NTAF webpage will act as a central information clearing house. Bryce and his Mom, Jennifer Zaccara, continue to make short Facebook and blogspot updates for additional daily detail. Bryce’s one page flyer is also attached for your convenience. Please feel free to forward this email and/or flyer to others to spread the news.

Many friends have already offered wonderful verbal, e-mail, and financial support and we thank you from the depths of our hearts. Please pray for Bryce’s continued recovery of motor skills (particularly his left arm), strength and endurance through rehabilitation, and uplift in his faith and spirit as he adjusts to his new normal. Please know all visitors are now welcome in Switzerland. May God bless you for all your love, prayers, concern, and support.

In Him,

John

October 24, 2009

Dad's Update IX - 10/8/09

Follow on update.

 God is our refuge and strength, an ever-present help in trouble.  Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging……."Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth."  The LORD Almighty is with us; the God of Jacob is our fortress.  (Isaiah 46:1-3, 10-11)

In the middle of the night, you awake to the sound of the Swiss medic helicopter as it lands at the Centre. Immediately your heart breaks as you pray for the sustenance of a complete stranger and his/her family and loved ones as they enter this world of paraplegia after some unexpected accident.  Life is changed forever...the learning curve of the “new normal”… with each day providing a new challenging twist or turn.  Yet there is always hope.....hope that God who promises His presence, will create a new purpose for His glory.

Meg and I returned home yesterday after two weeks at the Centre Suisse des Paraplegiques with Bryce and his mother, Jennifer.  Jennifer will remain through December and family members are beginning a rotation of visits (Uncle Adam 10/12-19, Cousin Cara in early November, and Grandma Zaccara in mid/late November).  We learned yesterday that Bryce leaves ICU next Monday, October 12th.  He will relocate to the third floor - a double in Ward C (patients reside in Wards A-D).  This provides Bryce with a new firm goal.  Although well cared for, it will be a relief to finally leave ICU.  Once on the ward, visitation should be more flexible.  We encourage friends to visit Bryce as schedules permit during this challenging time as the reality of what he has lost continues to penetrate deeper.  While he has a few new local friends visiting from the International Church of Luzern, he should be more available once the doctors remove his trachea tube in a week or two.  

Bryce has strengthened steadily over the past week in terms of breathing and eating – he no longer needs external intravenous food.  He has slowly weaned from the ventilator machine, as those pesky lungs continued to produce water requiring coughing or lung suction through the trachea hole.  Earlier in the week, he returned to intravenous water hydration  because his kidneys were expelling water too rapidly.  That problem seems to be improving.  He has struggled periodically with low blood pressure, low grade fever, and dizziness.  Another challenge has been a low appetite.  He isn’t exercising and therefore is not very hungry.  He doesn’t like the food very much, finding it salty and distasteful (I think it’s delicious), but that might be because he has lost his sense of smell since the accident.  We hope that once the trachea is removed, his olfactory system will be at 100%.  Over the last few days, his left arm has shown a few new signals so we are increasingly hopeful; his surgeon still believes movement will return.  We are hoping things continue to level out, especially the lungs, so he can make the transition out of ICU on time and get on with rehab. 

We found comfort locally at the International Church of Luzern (www.icl.ch), making lots of new friends who will visit Bryce over the next few months.  Pastor Wilson and his wife, Rachel, visited with Bryce last Sunday.  We are comforted by the fact there will be family members, as well as new friends visiting to keep Bryce’s spirits up.  We continue to be grateful for Jay and Nancy Adams of Black Rock Academy (Kadern, Germany) – who have generously graced all of us on so many levels.

Please pray for continued left arm feeling and motor recovery, kidney normalization, emotional and physical strength as he begins full rehabilitation, and for his faith in the Lord.  Also, please pray for efficient and effective insurance claims processing between the U.S. insurers and Swiss health care system. 

We thank many of you who have asked about Keefe.  Keefe is staying strong in his senior year at Taft, maintaining his school work, playing goalie for the Varsity soccer team, and hanging in there through the college application process.  He and Dad are visiting the Naval Academy on Monday, Keefer’s first college choice.

We are close to initiating some fundraising activities along with more detailed medical information about Bryce’s current status and expectations for recovery.   Please prayerfully consider how you might be able to support him.  We will provide more information shortly.  As always, we thank you for all your love, prayers, and support.  They continue to encourage and sustain us – and we are tremendously grateful.

In Him,

John

P.S.  Attached pictures of the Centre Suisse des Paraplegiques living quarters and central atrium for your interest.

October 24, 2009

Dad's Update VIII - 9/27/09

Follow on Update

 13 I am still confident of this: I will see the goodness of the LORD in the land of the living.  14 Wait for the LORD; be strong and take heart and wait for the LORD. (Psalm 27:13-14)

18 But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love, 19 to deliver them from death and keep them alive in famine.  20 We wait in hope for the LORD; he is our help and our shield.  21 In him our hearts rejoice, for we trust in his holy name.  22 May your unfailing love rest upon us, O LORD, even as we put our hope in you. (Psalm 33:18-22)

Dear Friends and Family -

I am back in Switzerland with Meg for the next two weeks until 10/7.  We flew back at a moments notice on Tuesday, 9/22 after Bryce asked us to come.  He had just emerged from his 5-day medicated coma/sedation after the second surgery and was struggling a bit more than when the pneumonia battle began.  Wednesday, he was very groggy, but very happy to see us when we arrived.  Wednesday night, he slept well and was much stronger Thursday.  Thursday and Friday night's sleep were good too, but last night Bryce woke in the early morning hours to a low fever.  Today he experienced some pain in his left arm.  We are hoping this is a good sign for movement recovery in the left arm again.  The pneumonia is healing gradually, and the doctors have slowed the trachea ventilator weaning process to be careful that it doesn't re-emerge.  So long as the ventilator is in, Bryce can't talk, but must communicate with lip movements; the process is frustrating for all.

Also, the process of sucking out the remaining phlegm through the trachea hole is harder, both physically and emotionally, as it causes automatic body convulsions, but he is getting more familiar (and frustrated) with the process.  Bryce desperately wants to get out of bed/ICU and move forward with rehabilitation.  Nonetheless, he is being encouraged by the Word, our presence, and steadily stabilizing health metrics, but basically his ICU time is "getting old".  He is still playing tough and in our minds has earned a Varsity ICU letter.

Andrew Parks, one of Bryce's close Taft/Colorado College buddies, visited Thursday and brought a breath of smiles and fresh air.  Bryce came off the ventilator (2x) allowing him to talk.  Bryce's strong voice and personality came shining through and he was able to post some messages to his Facebook wall with his Mom's assistance.  Bryce continued to improve after Andrew's visit and with a little grace from above, we may see Bryce exit ICU within a week or two.  We are praying for continued, daily progress.

Now that I am back in Switzerland and spending more time again with Bryce, my research and phone call efficiency has dropped so expect some communication delays.  Meg and I had substantial logistics and computer problems this week which used up significant time.  Our new studio phone number is 011-41-41-939-40-09 and I am reachable from 2:30pm-5:30pm each afternoon EDT.  You can leave messages on my cell phone (203-606-6354), but I will only check them through my landline at night. The best way to reach us is via Skype (jrafferty2 and megrafferty) as our Macbooks are frequently in operation during the day.  Also emails work just fine.  We are 6 hours ahead EDT.

At this stage, it seems hopeful that Bryce will be able to fully rehab at the Swiss Paraplegic Center in Nottwil, Switzerland.  The resources are superb and the cost effectiveness unmatchable.  I have talked to and researched various U.S. facilities and plan to reconnect with them in a month or two once we have further color on Bryce's condition, needs, and objectives.  We continue to research trust alternatives for tax efficient donations and have a primary goal to get that rolling soon.  However, aligning our financial needs and goals with government programs will take some more thought and planning first.  I hope to get that rolling this coming week.  I will outline Bryce's medical condition and needs more specifically in a subsequent update so you all can better understand the specifics of what Bryce is facing going forward.

We are cautiously optimistic that Bryce's health issues will continue to stabilize and he will get on the rehab schedule again soon.  Please pray for his full lung recovery, solid sleep and rest each night, continued steady feeling and motion improvement in his arms and fingers, a positive and hopeful attitude, and trust in the Lord to carry him through the challenges.

As before, our hearts our deeply thankful for all your emails, prayers, and support.  Next update later this week.

John

October 24, 2009

Dad's Update VI - 9/16/09

Follow on update

 Dear friends and family-

I am back in the U.S. where Meg and I are researching U.S. rehab options, longer term fund raising alternatives, and meeting with people who have been through this process before.  We are finding a wonderful new family of helpful, energized, and loving people willing to openly share their time and energy to a new friend in need.

While Bryce has recovered significantly from his pneumonia, he experienced a second setback with the loss of feeling and movement in his left arm after Saturday night.  He had been turned more toward his stomach to help clear the lungs, which helped significantly, but woke up with less arm utility.  After xrays, the doctors realized that his neck had shifted a bit from two of the metal plate screws loosening so he will need an extra plate fused onto the back of his spine to stabilize the front plate; part of the problem is softer bones, a Rafferty family inheritance.  We are not sure whether this movement caused the problem or whether it was simply a pinched nerve from the arm position overnight. Bryce now has a Philadelphia collar on to keep things more stable, similar to what I had when I broke my neck in college.  Surgery is tomorrow, Thursday, early in the morning. Apparently, this process is fairly routine, but Bryce is more frustrated and apprehensive about another operation and the obvious delay in rehabilitation.

Bryce lost his voice for a week due to the tracheotomy, frustrating him considerably, but we had the pleasure of Skyping him today to hear his voice again.  Given his improved pulmonary status, he has spent increasing time off the respirator (pulled out of his trachea hole), which allows normal breathing and flow over his vocal cords.  Bryce's strong voice came flowing out asking us all to pray for 1) him not to get discouraged, 2) for the doctors to perform a successful surgery to get his arm movement back, and 3) for him to keep psychologically focused forward.  He is well aware that the odds of getting his legs back are low, but he really wants to get his upper body back to power a wheelchair and increase mobility on multiple levels.  For all of you Prayer Warriors out there, that's the focus right now.  Also, when we asked what we could do for him, he replied that he desperately wants a HAIRCUT.  Can you believe that?  He truly is a changed man and retains a sense of humor in a challenging situation.

Feel free to call now that I am back in the U.S. (John 203-606-6354 or Meg 203-722-8045).  This is a Bryce research week for us.  Next week, provided everything goes well with Bryce's surgery (and I don't have to jump back to Switzerland), I hope to re-engage my job search process.  Please pray that I can manage all these challenges with aplomb.

In Him,

John

November 5, 2010

Dad's Update XX - 11/4/10

Back to Colorado College

 I can do everything through him who gives me strength. (Philippians 4:13)

I spent one month in Colorado, now one month back, and the good news is Bryce is doing really well and things are settling down…..

Back at Colorado College!

After a 4-hour flight to Denver on August 26th, suffering uncomfortably from autonomic dysreflexia, Bryce made it back to Colorado. His Mom helped get his room and school program organized over a few days, then I took her place as backup for the month of September, staying in a faculty apartment one block away. I was up briefly between 1:00am and 4:00am various nights helping Bryce turn in bed to heal a mild skin sore from his travel. I remember those warm, star-lit nights, dashing through the night sprinklers, repeating to myself, “It’s just like having a baby, you’re going to be fine at work tomorrow!”

After a week of acclimation, things settled down, although we did have an adventure the first week. Bryce went to a party, but didn’t show up to his apartment at 10:00pm when scheduled with his aide. Unfortunately, none of us knew where he was and he had lost his phone after telling me he was on his way, prompting a panic – Campus Security, the Colorado Springs police, and Dad walked the streets for two hours searching the off-campus perimeter, fearing he was lying in the gutter! Fortunately, God has another plan for Bryce; some friends brought him home and put him “on” his bed, but without the important things done to prepare him for the night. I went to bed assuming Bryce was instructing his friends, but apparently, he was not as communicative as he should have been. Dangerous complications could have occurred, but didn’t; he woke up the next morning with mild autonomic dysreflexia and a hangover, significantly repentant and humbled by the new “risk mitigation” issues to think about. We all are smarter and wiser from that episode.

Getting Down to Business

Bryce has “locked on” to learning again. He launched right into his first class on Comparative Politics in China, cranked through the readings, dictated papers, and earned an A- grade. Without his former flexibility and body strength, learning is now first priority. He loves his classes and finished a second course on International Political Economy, reading 150+ pages/night, and dictating more papers. Rock on dude! These achievements were particularly gratifying because right in the middle of the first block course, he got a topical skin sore (no idea how), forcing him to bed rest. He missed several classes, but friends took notes using a special high tech recording pen, and he was able to stay tuned in and return to crank out the final paper. In the heat of the crisis, one of his nurse aides suggested using “Bag Balm,” an amazing skin ointment from a Vermont dairy company, whose product is used on dairy cow teats in the winter to keep them from cracking. Amazing stuff; every house should have a can – look for the square green can with the red clover top that looks at least 50 years old on the bottom shelf of your pharmacy. It’s a miracle product and healed his skin sore within two days with almost the same speed as a baby’s skin heals – an oldie, but goodie. We did have a large group of friends praying concurrently, so we believe that helped too.

Bryce’s Colorado College friends have again circled around him in fellowship and the school has welcomed him back warmly. The Disability Specialist, Jan Edwards, Health office, and Security team have done a super job guiding and helping. Bryce has mostly used his manual chair, working up arm and shoulder strength with the help of his new “Emotion” battery-assisted wheels. One day, Bryce lost control on a down-ramp and crashed onto the sidewalk, falling to the side on the ground. Then another day he flew out of his chair on a grass field after hitting a hidden divot. Two weeks ago, some friends pushed him too hard from the sidewalk into the road and his foot peddle bars slammed into the road snapping a side pole off. He is reaching out to his old friends at the SPZ in Switzerland, who made the chair, to get a new part. Thank God for duck tape in the meantime. Every new week seems to be a new learning curve, not just academically. Bryce did take me out through the awesome and expansive South Park, by the Collegiates in Buena Vista, and on to Independence Pass so I could get a “Rocky Mountain high” experience. Thank God he demanded that I take a swim in the lovely lake at Independence Pass; the water was delightful.

Dad’s Planning

While Bryce is doing extremely well physically in Colorado and has blended into a set schedule with morning, noon, and evening nurse support, Meg and I are researching whether to move out to Colorado to be backups for him over the next two years and perhaps longer term. We should make a decision within the next few months, and I will probably be back and forth. A successful September stint working out of the Colorado Springs Merrill Lynch office showed that the flexibility offered by my credit risk management job at BAML has been a special benefit. I was working such long hours on various projects in Colorado, I didn’t see as much of Bryce and others as I would have liked. That’s ok; he was busy at school reconnecting with friends and showing strong independence. Meg joined me for the last week. I had the opportunity to give her a big sky mountain tour, eat some incredible buffalo tamales at Dorothy’s in Hartsel, South Park (a must do for those in Colorado), and visit some friends in Denver.

Christmas in Connecticut

Bryce returns to CT on 12/23/09 for Christmas and stays 2.5 weeks, returning to Colorado on January 9th. He has a rehabilitation review assessment at Craig Hospital in Denver on January 16th for a week, then returns to classes at Colorado College on January 24th. Bryce has decided to continue through summer classes, with a summer vacation break in August to complete his senior year as quickly as possible. After his Craig rehab review, we will begin researching a van to enhance Bryce’s travel flexibility. With God’s help, he will be able to drive himself with special equipment since his left arm has strengthened significantly.

Contact

I have uploaded new summer and Colorado pictures to Bryce’s NTAF webpage and organized the gallery in chronological sequence for easier viewing. Feel free to visit the site for pictures and history at: http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/815E84D4-9B4D-12A9-3B8B55A769EC3F1C or google “NTAF” and search for his name.

Of course, Bryce would be happy to hear from you directly. Please feel to contact Bryce by phone 203-232-2705 or email [email protected], or contact me at 203-606-6354 [email protected]. Sometimes, we can be slow to respond, but we will.

Blessings to you,

John

November 16, 2009

Dad's Update XI - 11/15/09

Ongoing update.

 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come to pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.” (Jeremiah 29:11-13)

Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. (James 1:12)

Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but what is unseen.  For what is seen is temporary, but what is unseen is eternal.  (2 Cor 4:16-18)

“Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.”  (Matthew 11:28-30)

 ______________

As the days have worn on since my last update, weariness, anguish, and anxiety have risen into our hearts and minds.  We are all mourning a life of expectations lost.  Bryce is mourning the loss of the beautiful body and motor skills that God crafted for him.  Three months have passed since the accident; as the emergencies settle down to more understandable and predictable acute issues, and as rehabilitation picks up speed, the road becomes clearer, but looks harder.  Like Frodo looking out over the swamp toward the mountains of Mordor in Lord of the Rings, fearing the long, seemingly impossible road ahead, we wonder how we are going to survive and accomplish the new life ahead.  Frames of reference are changed forever.  Paraplegic status, if he can get there, seems almost dreamy and heavenly given its much wider range of abilities and lower needs for custodial care.  Our faith is also being challenged. We KNOW that there will be dark moments, but we keep reminding ourselves that He has a plan.  We are trying to trust Him, when the pieces don’t seem to fit, and recognize that our prayers will be answered in His time and according to His will.  We rest on the belief that all this suffering is preparing us to meet Him – that is where our HOPE comes from.

Bryce

Bryce has made steady improvement in recent weeks.  While he is not out of the acute stage yet, with bouts of dizziness, blood pressure and temperature swings, bladder infections, and minor early stage pressure sores, his body is stabilizing and he is managing better.  As predicted by his doctors, and after intense pains, his left arm is coming back slowly – too slowly for Bryce’s liking, but what an answer to prayer!  He now has his left bicep working down to the elbow.  This has picked his spirits up and allowed his old impatience and frustration to return (a good thing) so that he is attacking and accelerating his rehabilitation (more hours per day).  Come on Bryce, you can do it!  Fight buddy, fight!

He has also been inspired by various friends and family visiting, giving him needed time to talk and express himself.  His cousin, Cara Hall, and Grandma Zaccara just visited in November, followed by various classmates from SIT World Learning in Geneva popping in a few times.  Other Colorado College friends have sent some of their most precious things to comfort him.  One lady friend created an amazing Tree of Life wall hanging that blew us all away; its intricacy and boldness, whether planned or not, reminds us of the cornerstone in Psalm 1 and the Gospels.  Bryce’s friends have given him an incredible uplift in person and daily over Facebook.  He pines to return to the U.S. to see more of them, but acknowledges that patience is necessary for the best plan of rehabilitation to play out.  His roommate, Martin, also a former guitar player with solid command of the English language, has become a good buddy and several other caregivers also speak good English and have become valued partners.

Bryce has lost 40 pounds (down to 180), but still looks good.  As therapy continues over time, he will put back more muscle.  Jay Adams showed up the other day with some German beer and a McDonalds Big Mac, both of which were summarily dispatched with great alacrity and appreciation.  When Skyping with Jennifer last week, Bryce suddenly wheeled up in the background in his new electric wheelchair, said good morning, then wheeled off on his own to complete 6-7 hours of rehabilitation that day.  I smiled with joy, seeing his independence.  His Colorado College roommate, Mike, just arrived.  Bryce wheeled down to the train station (8 minute walk by path) to greet him to a howling, “Rafffferrttttyyyyy!”  Much to share between those two and probably some tears.  Mike will be visiting Bryce for a week.

Family

One of the wonderful miracles that have occurred through this event has been the reconciliation of communications among me, Meg, and Jennifer.  We have all been working together well and talk by Skype almost daily.  What a blessing that has been! Yes, there have been some trying moments, but the Holy Spirit has been at work helping us to forgive and move on for Bryce’s benefit.  Keefe has been doing well finishing up his fall senior semester at Taft and working on college applications.  He already completed  his Blue & Gold interview and met with Senator Dodd’s nomination staff.  He makes his second trip down to the Naval Academy this week to attend two crew practices, stay overnight, and attend classes.  He is also interested in Trinity. 

Decisions

The SPZ has been a wonderful place for Bryce’s surgeries, ICU recovery, and initial acute stage rehabilitation.  Meg and I are going over on 11/23 for Thankgiving week and returning the 30th.  On the way though Atlanta, Meg and I will visit The Shepherd Center, and in early December, I will fly to Denver to visit Craig Rehab; both are “Top Gun,” holistic SCI rehabilitation centers providing a broad range of intensive, family-centric therapies, including lots of athletic and outdoor activities.  We will fly back to Switzerland for 2 weeks over Christmas/New Years as well.  A Taft parent has donated free flight miles for family members for our trips over to Switzerland at Thanksgiving and Christmas, a delightful unexpected gift.

We anticipate having a meeting with SPZ staff on 11/25 in Switzerland to compare their plans over the next 4-6 months to the services offered by Shepherd and Craig and how each dovetails with insurance coverages and limitations.   Bryce could possibly stay the full 9 month term at the SPZ or perhaps be flown back earlier, clinical health status permitting, within 30-60 days.  Discussions are ongoing.  We will lay out the strengths and weaknesses of the alternatives to Bryce and see what he wants to do.  We hope to resolve a decision by the end of November.  Some fights between the two insurers over which is the primary insurer and difference in approaches between the U.S. and Swiss centers are complicating the decisions.

News and How You Can Help

All past updates and new pictures are on the NTAF website along with an easily printable flyer (“Bryce Donation Flyer”).  There are links to his Webpage and Facebook as well.  For a quick visit, paste the following to your browser:

http://www.transplantfund.org/find-a-patient/profile/index.cfm/patient/815E84D4-9B4D-12A9-3B8B55A769EC3F1C

We invite you to pass this email on to your friends and family.   We ask for your generosity this Thanksgiving/Christmas season.  Bryce will need an enormous amount of financial help going forward.   Even though we have not fully determined his exact annual needs and we expect some more physical capability through intensive rehabilitation over the next 6 months, there are sizable near term expenses uncovered by insurance such as a customized van and handicap-access improvements to his home.  Our initial NTAF goal is $200,000 and we are a long way from there right now.  The substantial majority of funds donated “on behalf of Bryce Rafferty” are available for reimbursement of his expenses not covered by insurance or government programs.

Next Steps

We continue to work on drafting a supplemental needs trust for Bryce for his long term custodial care needs. In 2010, we intend to approach a more targeted fundraising effort with the goal of establishing a long term portfolio for him.  We are looking for an independent trustee, satisfactory to both parents, who could be the fiduciary for distributions.  We are also open to anyone who is interested in leading fundraisers.  All suggestions and/or volunteers are welcome.

New Development and Prayer Need!

Meg just entered Norwalk Hospital this evening for DVT (Deep Vein Thrombosis).  She has a large blood clot in her common femoral vein between her groin and her knee that began to emerge in recent days as she battled the Swine Flu.  She will be undergoing non-invasive vascular surgery called catheter thrombolysis with a clot busting drug named TPA on Monday to help clear the clot more quickly.  Certain complications can occur so we need some extra prayer for her over the next few days. 

Please pray for:

1.    Recovery of the rest of Bryce’s left arm and for his left shoulder pain and spasms to ameliorate.

2.    Insurance company coverage to be clarified and agreed upon.

3.    Wisdom and discernment over where Bryce should be for completing rehabilitation.

4.    Continued good relations among families as we finalize long term trust documentation.

5.    That Keefer would be accepted by his new love, The Naval Academy.

6.    The above mentioned operation and recovery for Meg.

7.    Job opportunities for John.

Thank you for all your support and prayers.  WE REALLY FEEL THEM AND THEY ARE WORKING.

John

 CONTACT _Con-392B10101 \c \s \l John Rafferty

203-606-6354

[email protected]

October 24, 2009

Dad's Update V - 9/13/09

Follow on update

Dear all-

Bryce

Bryce's pneumonia has slowly improved as he slept well over the past two nights.  He is now resigned to relax and knows how important that is for his lungs to heal.  Yes, he is frustrated, but more about the delays in rehab because of his body's weakness from the pneumonia.  We have seen some increasing use of his arms (raising and lowering) and the turning of his wrists.  We suspect he is doing his own physical therapy when alone.  His body is being turned well here so no signs of bedsores, except 2 mild ones from lying on his side for 13 hours two nights ago; these are healing fine.  His Mom is applying lotion and massage to his body daily which Bryce really appreciates.  Sounds like he will be in ICU for a while until his lung condition clears. 

Insurance

We finally have the statement of benefits from the two insurers and are reading through the documents.  The representatives from Taft and SIT World Learning assure us that we have significant coverage, most likely enough to cover the next 6-9 months.  As a skeptical analyst, having seen big differences between executive assurances and what actually is legally in contracts, I am diving into the detail to make sure things are ok.  Long term needs will have to be covered in other ways, but we have some time to focus on that a bit later.

We continue to be highly impressed with the Center Suisse des Paraplegiques in Nottwil where Bryce is being treated.  At this point, we would like to keep him here for the full estimated 6-9 month rehab because of their holistic approach, leading edge technologies, incredible facilities, and overall cost effectiveness ($2,260/day, bundled pricing). The center has its own wheelchair and other equipment design and repair facility (like an industrial tool design, manufacture, and repair department) to help custom manufacture the right tools for each patient.  While we are at the early stages of reviewing U.S. rehab alternatives (first making calls to other quads and paras out there who have been recommended to us for advice and perspective), we sense that the U.S. options will be far more expensive and logistically more difficult.  The Swiss Center's global reputation is stellar as well.  Making the right decision on when to bring Bryce back will depend upon an assessment of how all these pieces logistically work together most cost effectively.  He also has become quite comfortable here.  We are hoping to have prudent conversations and interactions with the insurance companies as they are already calling frequently for information and suggesting more rapid return to the US.

Logistics

I am returning home Monday afternoon and will be restarting my job search along with follow up conversations and research for Bryce.  His Mom is staying in Switzerland for at least another month to see him through ICU and into full time rehab.  I will be linking in to Bryce twice a day via Skype at 1:00pm and 7:00pm Swiss time.  We had our first practice session today and linked in with Meg at home.  The software is so easy to download and offers a solid picture without any lags like a few years ago.  Remarkable technology!  I encourage others to do the same after Bryce emerges from the ICU.

This coming week, Meg and I will take a solid look at Caring Bridge to see if we should migrate from these emails to that.  Other areas of interest for us include a personal website with fundraising capability, perhaps through a foundation or trust.  Still more research to be done on that.  If anyone has expertise with website construction and how best to approach long term fundraising, we would be interested in talking further.  I am asking the same questions of other quads out there to learn best practices.

As of Monday evening, you all can reach me stateside at my cellphone 203-606-6354.

Thanks again for all the emails, prayer, and support.  Reading them has greatly encouraged us and helped to relieve lots of worry and stress.

In Him,

John 

October 24, 2009

Dad's Update IV - 9/10/09

Follow on update

Dear all-

Bryce emerged from his tracheotomy this morning and had a difficult  time adjusting, as we did, to the new manner of breathing and swallowing, but by the afternoon, he was settling down with it.  Like some other moments over the past week, he said, "it sucks,"  which when you boil it down, requires little to modify. This process has simply been "awful", but he is working through it courageously day by day.  He does have pneumonia, but it is improving with anti-infective treatment; unfortunately, this problem has set him back a bit on nerve recovery diagnostics and getting  back out in the wheelchair because he is so exhausted. The doctors are moving him around in bed consistently and Jennifer is doing what  most moms would do in this situation by using cream to keep his skin  in good shape.  We are hoping and praying for a good end of week.

His Mom and I are now posting to Bryce's Facebook page and I am slowly increasing my new Facebook friends distribution to shift to  an easier global update mechanism.  More pictures and videos to follow in time.  Bryce is reading all the postings with his Mom's help and will get back to his own posts as his health strengthens.  It's a great way for folks to briefly offer their support to him directly.  We just started exploring many of the suggestions and people to call and hope to get more done if Bryce settles down  through the week.  One of the challenges we have is the high cost of phone calls to the US, so we are now Skyping more.  My Skype address is jrafferty2 and a good time to reach me is between 8:30pm and 11:00pm (2:30pm - 5:00pm EST).  My studio apartment number is  011-41-41-939-40-07.  Jennifer's number is 011-41-41-939-40-08 and her Skype address is Zaccaraj.  Given my variable days and time delays, another good way to get to me is through Meg at 203-722-8045 and her Skype address is megrafferty.  While my cell is listed below, it is very expensive to use over here so I try  to stick to email on it.

Jennifer and I are trying to spend as much time as possible with Bryce on a shift basis, but it can be hard in the ICU given all the therapies he receives. Somehow, the days go by like lightening and we are exhausted at the end of the day.  One thing is for sure; he is receiving excellent care, and we are all learning a bit more German.  We met with a nurse today who shared some amazing quad stories that gave us hope that Bryce can make an exciting new life for himself, even with his significant new disabilities.  We sent Keefer home this morning to start school at Taft tomorrow.  He had a day or two to connect with Bryce, but was a bit disappointed to have Bryce sedated for his last two days.

Prayers should continue to be centered on clearing up the infection and pneumonia in his lungs.  Also, please pray that the spinal cord damage will begin healing and that he gets more use of his upper body and arm muscles and his fingers.  A wonderful miracle would be the recovery of his fingers to be able to play guitar again as Bryce was an exceptional guitar player.  Finally, pray that he will keep his spirits up in this tough new world of the "new normal."

Thanks again for all your support dear friends.  Your emails and phone messages have been wonderful.  Please know that they are highly valued and that in our free time, we are trying to do more external research toward longer term U.S. based solutions where we could really use the most help down the road.

John   

October 24, 2009

Dad's Update VII - 9/20/09

Follow on update

"God engineered circumstances.  He used them to prove Himself as well as my loyalty.  Not everyone had this privilege.  I felt there were only a few people God cared for in such a special way that He would trust them with this kind of experience.  This understanding left me relaxed and comfortable as I relied on His love, exercising newly learned trust.  I saw that my injury was not a tragedy but a gift God was using to help me conform to the image of Christ, something that would mean my ultimate satisfaction, happiness - even joy."  (From "Joni" by Joni Eareckson Tada)

"For it had been granted to you on behalf of Christ not only to believe on Him, but also to suffer for Him,"  (Philippians 2:11). 

"And we rejoice in the Hope of the glory of God.  Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has freely given us."  (Romans 5:2-5.)

 Dear Friends & Family:

I read the quotes above over the past two weeks as we have suffered through the challenges with Bryce.  They gave me hope.  The words of Jesus in the gospel of John have given Bryce hope.  Jennifer, his mom, has remained by his side giving him comfort and Jay and Nancy Adams from Black Forest Academy near Basel have swooped in like angels to help each of us in so many ways.  We continue to be comforted by all your love and support; your prayers are working and substantially appreciated.

Bryce emerged successfully from surgery last week and has been sedated now for several days. He will continue like this until midweek to avoid any complications from infection.  Rest is key and the pneumonia cleared up finally, but the doctors are not taking any chances. They added a new brace on the back of his neck to help stabilize it; the front brace had healed pretty well and two screws were re-stabilized into firmer bone.  It appears that the neck is now very strong and will not be a problem again.  Once he is fully awakened later this week, he will gradually shift off the trachea hole ventilator until breathing fully on his own.  If successful with that, the trachea hole will no longer be needed and be closed up.  Sounds like he will remain in the ICU for another week or two until that process is complete.  There is a little swelling in his lymph nodes related to the surgery and some temperature, but other systems are working ok and his skin remains in good condition from frequent rolling. 

I am still working down my list of research to-dos and phone calls that include:

- Special Needs Trust for fundraising

- Supplemental Security Income

- Various Rehab facilities, including Kessler (NJ), Burke (NY), Gaylord (CT), Spaulding (Boston), Shepherd (Atlanta), and Craig (Denver)

- Perspective and resources from various Foundations (i.e. Christopher Reeves, Miami Project, others)

- Other CT and MA government programs

- Further conversations with new quadriplegic friends and families that have been recommended to us

Insurance coverage appears to be fine for now, whether we decide to leave him at the Swiss Paraplegics Center or bring him back home to another U.S. rehab facility.  We will have a decision point once he is out of ICU and capable of travel, perhaps in a month.  There are strengths and weaknesses on both sides to review and assess and Bryce has to be educated on the options and must opine for himself.  This will be a collaborative process with the insurance companies and carefully thought through.

Please recognize that following up on all the phone calls, recommendations, visits, and research takes time even in more normal, non-emotional situations.  We are so touched by your emails and will answer all of them along with phone calls in due course.  Meg and I have communications occurring 2x/day via Skype with Jennifer (and Bryce when awake) to keep abreast of how he is doing.  With Bryce in forced sedation, things have quieted down a bit this weekend.  Apparently, Bryce was able to move his left arm up today (in a brief communication moment with Jennifer) so that is encouraging.  I think he is approaching physical therapy like a double diamond ski trail to be conquered and is biting at the bit to launch down the slope.  Let's keep praying that the opportunity comes sooner without other complications and that his mental attitude remains good.

Visitation by others will depend on how he comes out of this sedation process and moves back to normal breathing and talking on his own.  We would hope that could be later this week, but it may drag another week, perhaps two.  We will just have to see how he progresses. 

Will update again later in the week. 

In Him,

John

October 24, 2009

Dad's Update II - 9/4/09

Follow on update

Dearest friends and family

Thank you for all your emails, calls, prayers, and support.  Please forgive me for the general response again.  For those we missed before, sorry, we are continually expanding distribution.  Free time remains limited here and we would like to follow through with specific suggestions that many of you have offered.  The week has been exhausting, emotional, and very busy with lots of discussions, visits with Bryce, figuring out insurance coverage, finding longer term living facilities, and trying to use computers that not only have different keyboards, but are slow and crash prone.  We are also exploring a personal blog (or two). Longer term needs remain opaque.  More to come on that later.  I get my laptop tomorrow so I should get much more efficient. 

Bryce

Bryce's surgery was successful. The neck is stabilized and we await bleeding and swelling reduction which will hopefully result in more movement.  Bryce remains in the ICU and is undergoing daily physical therapy to prove breathing skills with fewer muscles. He has been in a wheelchair for a short time for each of the last three days.  Tough process to get there, but big win and smiles each time.  As he prepared for his first wheelchair facility tour yesterday, he said, "We're going BIG!" while flirting with Sibille, the pretty blond physical therapist. While we were waiting down in the main atrium, he came wheeling up with a big smile and helped himself to his first Coke sip.  That look from commercials of long ago emerged with a slight nod of the head, then "ahhh, so good!".  The beer is down the road!  Last night he got his first good night's sleep and was much happier and stronger today.  He has a very positive attitude under the circumstances and is hanging tough.  Some positive new experiences, but we are only at the beginning of a long hard road.

Communications

Please do not try to call the facility here unless very important.  Visitation should open up once he gets out of the ICU in a week or two, hopefully less.  For snail mail, the address is:

Centre Suisse Des Paraplegiques

Guido A. Zach Strasse 1

CH-6207, Nottwil, Switzerland 

Bryce's email address is [email protected] and he is on Facebook. We are almost ready with a blogspot. 

Finance and other

Preliminary news suggests full insurance coverage for his Swiss care needs. What a blessing based on minimum insurance coverage required under Swiss healthcare laws.  Bryce could be here for up to 9 months of physical and mental therapy to train him holistically for independent ADL.  Hopefully, that time will be shorter.  Jennifer will be staying here for months while I will probably be here until next Wednesday.  We still need to explore many issues surrounding getting him back to the US and what his long term physical and financial needs will be.  We will also rest easier when he is out of the ICU. 

That's it for now. This center is absolutely a blessing from above and Bryce is receiving unbelievably good care.  He is being really tough and has been a trooper through it all.  We are very proud of his grit, determination, and positive attitude. 

Please continue to pray for spinal cord healing, increased use of his arms, biceps, triceps, and fingers, use of his torso and rib muscles, and miraculous movement and feeling in his legs. 

In Him,

John  

October 31, 2009

Dad's brief -10/30/09

Quick update.

Bryce's left arm is working again, slowly but surely! He can lift the forearm up with the bicep. Great news and answer to prayer. He is getting acupuncture treatment too. He had a developing pressure sore earlier in the week, but that is improving (in bed all week) so he should get back into the wheelchair a bit this weekend. His Mom says he is getting stronger mentally with some of his old edge back. Continuing to roll in rehab...

October 24, 2009

Dad's Update III - 9/7/09

Follow on update

Dear all-

While Bryce had gained good strength into the weekend, he had a setback starting yesterday.  He had a tough night last night.  He has continued to struggle with coughing up phlegm from his lungs and now has a lung infection and fever.  He has been sedated with some additional lung therapy until Wednesday morning so that he can get needed sleep and solid oxygen for the next two days to help clear the infection.  He continues to be a "street fighter" through all this, but he is very tired.  Please pray for his lungs to heal so all can focus on physical therapy. As his body slowly adjusts automatically to this new reality, there will be ups and downs like this - we are told this is the "new normal" for the near term.

Keefe came over Saturday and had some good quality time with him touring around the facility and grounds in his wheelchair.  We all were getting really excited about a quick recovery and were disappointed by this new event.  Some of you have suggested people with similar disability to talk to.  Thanks for those suggestions.  We were just about to think through some phone calls and other research when this event happened.  Since tomorrow will be a quiet day, we may be able to follow up with those calls.

I have now joined Facebook as Bryce's friend and will begin posting on Bryce's wall for more frequent updates.  They will be kept general for confidentiality, but over time, we'll add pictures and movies and ongoing updates.  Patience though, all this will take time.  His Mom is helping him read his Facebook each day and helping him respond.  His first read and response was a very tearful exercise given all the love he received, but he has been strengthening mentally through the process and really appreciates everyone's comments and good wishes.  It's amazing how many friends Bryce has!

I was originally planning on coming back this week, rather than my scheduled 9/14, but have decided to stay until Bryce emerges from this lung problem.  Hopefully, it will clear this week so I can come back on time and get back to some other important responsibilities (job interviews and US rehab research.)  The center has studio efficiencies next door that are quite nice at reasonable rates so we are well taken care of here.  Food is very expensive though.

John

October 24, 2009

Dad's Update I - 9/1/09

Accident Summary

 On Sunday, August 30, Bryce (John's oldest son - 20 years old) was involved in a diving accident in Switzerland.  He was medflight/flown from the site of the accident to the 'Centre Suisse de Paraplegic' in Nottwil, Switzerland.  Bryce had arrived in Geneva earlier in the week (Wednesday, August 26th) to start his first semester of his junior year abroad.  We were all very excited for and proud of him.  We still are.  I've attached two recent photos of him (For those of you who do not know Bryce, he is the handsome tan one!!).

We understand many many many people are praying for Bryce.  This is certainly beyond our realm of comprehension.  For this, we thank you from the depths of our hearts.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. II Corinthians 12:9-10

The following are John's words:

We are at the early stage of Bryce's injury right now so please be patient with questions.  Each day will hopefully bring progress and new information.  Communications by phone are very expensive so responses to emails and phone calls will be limited; best to call Meg at 203-722-8045 for verbal updates.  I am in Switzerland right now with Bryce at the Centre Suisse de Paraplegiques in Nottwil, near Luzerne (41-41-939-54-54).  Jennifer, Bryce's mom, and Aunt Leslie are here too.  Jennifer will be here for an extended period of time to support Bryce through the following difficult months.  Her number is 011-41-079-880-6320 and email is [email protected].  Here are the facts as we know them right now.

Bryce incurred a neck injury diving into Lake Geneva in shallow water.  He apparently dove poorly in a freak mistake (too vertically) and slammed into the bottom head first.  He lost feeling from the chest down immediately and was floating face down in the water, without use of his limbs, when he was rescued by nearby swimmers.  Some quick and good decision making by local people lead to him being airlifted to this center, which specializes in these types of injuries.  He never lost consciousness and seems to be fully communicable. We have not seen the police report yet so we need to confirm these details among others - these are Bryce's recollections.

He is currently paralyzed from the chest down, with limited use of his arms (can bend arms, but cannot stretch them, and cannot use his fingers). He has some movement and feelings in his arms and hands, but not much. This is called 'quadraplegia' (or 'tetraplegia' in Switzerland); if he regains use of his arms, then that is paraplegia.

He badly fractured C-6 and has a contusion of the spinal cord from the compression - blood (hemotoma) and other swelling damage (endema) in the spinal cord from C5 to C7.  After CAT and MRI scans, the doctors decided to operate to stabilize the spine.  In the process, they removed C-6 and took pieces from his pelvic area to stabilize the area, then bolted on a metal plate to fuse C-5 to C-7. 

It is too early for us to know recovery outcomes.  Each day brings new opportunity for new movement to emerge.  This will take some time to clear up (4-6 weeks) and show any fruit.  Recovery of his arms and hands will depend upon that clearing up process, but it appears highly probable that he has permanently lost use of his lower body.  He is undergoing extensive daily physical therapy to help re-engage his nerve system.  The nerve system is comprised of 3 key areas: muscles, feel, and autonomic, the last area being a kind of balance and control system that manages all the parts of the body.  Because of the loss of muscle control below the diaphram (rib and trunk muscles), Bryce has been having trouble breathing, but they are working on helping him learn to exercise the shoulder, neck, and diaphram muscles in a new way to normalize his pulmonary process (effective coughing and clearing throat). His air intake is strong at 1.8 liters.  Getting him to a wheel chair is a primary goal too, expected on Wednesday.

He cannot be moved until the respiratory training program is finished - perhaps about 3 weeks, but more likely 4-6 weeks.  The normal recovery under the Swiss Centre's training recovery process is 8-9 months, incorporating both physical and mental programs.  US programs are apparently shorter, but according to the Swiss, less effective holistically long term.

On the positive front, we are praying and hoping for respiratory and upper body improvements and apparently if he can get up to his elbows back, he can be trained back to independent activities of daily living (ADLs).  The center here has awesome physical therapy and facilties and apparently is one of the best places in Europe for this type of injury (100-150 people per year).  The SIT organization (international school) has been absolutely fantastic in its responsiveness and care for Bryce and us during this week here, sending three people to take care of us and pay for our housing.

We are still trying to get information on available insurance coverage from SIT and Jennifer's Taft School policy.  Not sure what limitations there are yet, but we anticipate a cost far above what we can afford collectively.  More to come on that.   

Please pray for Bryce's continued improvement, for his psychological adjustment, and for us all to communicate effectively through this challenging process.  There have been many shed tears on this end and deep sadness, but we are strengthening with perseverence for Bryce to help him through the mighty challenges ahead.

All ideas and suggestions regarding US based expertise and facilities, governmental programs (Fed, CT, and MA), and SSD-Medicare-Medicaid are welcome.

John

February 10, 2010

Dad's Update XV - 2/10/10

SPZ - Craig transition

 O Lord, let your ear be attentive to the prayer of this your servant and to the prayer of your servants who delight in revering your name. (Nehemiah 1:11a)

Answer me when I call to you, O my righteous God. Give me relief from my distress; be merciful to me and hear my prayer. (Psalm 4:1)

Until now you have not asked for anything in my name. Ask and you will receive, and your joy will be complete. (John 16:24)

_________

While many good events have transpired in recent weeks as Bryce relocated to the U.S., this is a time for prayer to the God of Abraham, Isaac, and Jacob for protection and guidance during a very uncertain time. Bryce’s need for a fourth surgery, my need for employment, and Meg’s ongoing recovery from her blood clot surgeries have brought us to ask for more intense and focused prayer. We ask our friends and family to pray and petition with us for wisdom, discernment, guidance, and courage over the next few months.

Successful Relocation:

On January 18, 2010, a medical nurse and I escorted Bryce from Switzerland to the United States. We were blessed with good weather, eight successful wheelchair/plane/seat transitions, no pressure sores of significance, and no sudden medical surprises. Flying business class was key. Bryce had a nice farewell gathering amongst SPZ friends and staff and bid goodbye to his home of the past 4.5 months.

After almost 24 hours of travel time, we arrived at Craig Hospital in Denver, welcomed by the warm smiles and laughter of nine Colorado College friends who trekked the 50 minute drive up from Colorado Springs. While everything slowed down that first week amidst administrative tests (by Craig’s staff), Bryce is now settled into a nice single suite, again with a view of the mountains - this time his beloved Rockies. Craig has a warm, professional, and welcoming staff that jumped quickly to welcome their new charge. Bryce came to appreciate his new surroundings quickly, relishing the American food and language, but also gained a stronger appreciation for the SPZ (i.e. daily shower and shave versus every other day at Craig). I told him he was back in cowboy country so “get with it!”

Early on, my nephew Andre Turrettini (who lives in Denver) visited and took me out to chill over good Colorado beer. I took Bryce out to Caribou Coffee for a trip down memory lane (our years in Atlanta, GA). Since day one in the U.S., Colorado College friends have visited regularly, providing wonderful uplift to Bryce’s spirits amidst the pain and anguish of losing his left arm again. This past weekend, he was able to transfer to a rental car with assistance from his mother and Uncle Glenn and take a ride up to Frisco near Breckenridge to breathe in the Rockies more fully. While all these visits and trips are blessings, we suspect that such events are bittersweet, triggering lots of deep pensiveness, feelings of loss and change, and outright sadness. The road to recovery remains full of bumps, both physical and psychological, but Bryce is adjusting well and continues to look forward.

Medical Update:

Bryce lost most of the feeling and strength in his left arm, for the second time, right before leaving Switzerland. New MRI scans show a growing cyst above the scar zone – essentially fluid building up above the C4-C7 lesion zone up to C1. The Craig neurosurgeon believes this to be the primary cause of the left arm loss (the second time), whereas the first loss seems to have been related to pinched nerves (early on in the surgery recovery process) as his surgical plate had shifted. The Swiss doctors had similar thoughts, and originally recommended moving cautiously to give it time to be very clear, but now agree with the Craig doctors to move forward with surgery. Bryce has decided to proceed with the surgery with the hope of regaining left arm functionality (55% favorable probability) and reducing risk of further loss. However, there is the serious risk, albeit a low probability, that Bryce could also lose mobility in his right arm after surgery, and/or even have to go back on a ventilator. I have reached out to two other U.S. neurosurgeons at KennedyKrieger and The Miami Project to gauge their thoughts on this very important surgery.

Last week, the Craig team presented Bryce’s preliminary review. While the upcoming surgery precludes setting target completion dates and goals at this time, his review was quite good. Craig will help him maximize his skills and independence, assuming only the right arm is usable going forward, but if the left arm strenthens, they will quickly adjust his therapies. He has returned to the pool, engaged in functional electronic stimulation (lower body strengthening), practiced standing therapy, and taken various SCI education classes. Other ADL (Activities of Daily Living) therapies will pick up steam too. We just purchased an assistive communications device to improve voice access to his cell phone (203-232-2705) and Skype (braff68), and help him respond effectively to emails ([email protected]) through dictation. He continues to read his emails, Facebook wall postings, and the NTAF guestbook; with practice and time, he should initiate more communications.

Financial:

Bryce is applying for SSI and Medicaid coverage in Colorado, where he may choose to live after completing his final two years of college. This should help with health insurance coverage going forward, particularly with ADLs that aren’t covered by insurance. More to come on his financial needs and goals later in the spring once we have post-surgical clarity and the application is approved.

We are exceedingly thankful to Trinity College Alpha Delta Phi brothers, Doug Bennett and Steve Slade, who organized a most enjoyable fundraiser for Bryce at Dad’s old fraternity. Over sixty brothers returned for the festivities, which included an auction of various items and donated golf outings. One generous brother donated a $10,000 anonymous matching gift, while another generous friend of a brother donated $5,000. The total raised approximated $62,000: almost $50,000 going to the NTAF to help cover Bryce’s sizable first year uncovered expenses and about $12,000 going directly to the undergraduate fraternity to help them with their capital needs – a big win for both parties! Thank you dear brothers!

We also thank Juliana Hatfield, an indie singer/songwriter and friend of Meg’s from Duxbury, MA who has solicited support from her fan base via her website as she releases a new album February 16th. Check it out at www.julianahatfield.com.

We are close to ironing out final details for a longer term supplemental trust for Bryce.

Other:

Things related to Meg and Keefe have settled down to normal again. Meg is strengthening daily and getting some extra exercise, but we did experience yet another surprise freak accident where a large heavy sign fell suddenly on her head a week ago, prompting an emergency visit to the hospital and a CT scan. Since she is on blood thinners, these types of things are scary – and this one was really bizarre!

The Naval Academy Foundation has contracted to sponsor Keefe to The Kent School, in Kent, CT for a post-graduate year to prepare him for formal entry to The Naval Academy in the summer of 2011. Nationally, Kent is a crew powerhouse and will be a superb place for him to train. Additionally, we have the blessing of providing special urg & sculls training for Keefe with a former Russian national crew team member this summer. We give thanks to God for Keefe’s acceptance to the Naval Academy’s Foundation Program as well as Meg’s protection from serious injury. I am looking forward to Annapolis visits and we are REALLY proud of Keefe’s accomplishment through the grueling admissions process under very difficult circumstances.

I am now fully networking again for employment opportunities. A few things are bubbling in the private placement and banking sectors, but I could certainly use more activity and doors opened as the interruptions from Bryce’s situation made my search inefficient over the past 5 months. As a seasoned fixed income corporate analyst and portfolio manager, I welcome any suggestions on leads, contacts, etc. My focus has been in debt private placements, public bonds, bank credit/portfolio management, loan review, and mezzanine debt.

Specific prayer requests:

We will be on our knees the next few weeks as we pray for God’s plan for Bryce and for overall decision-making guidance and wisdom. Please pray that we would:

• Acknowledge God’s sovereignty, trust His plans for us, and patiently wait for resolutions in His time, not our time.

• Gain wisdom, discernment, and confidence, through this challenging time with Bryce.

• Believe in and see successful spinal cord surgery and recovery of Bryce’s left arm functionality.

• Help Bryce focus on setting goals and maintaining a positive attitude as he pursues aggressive rehabilitation at Craig.

• Have success with other planning items (Jennifer’s home remodeling, Bryce’s college financial aid, SSI/Medicaid application, long term nursing care staffing, and finalization on a long term supplemental needs trust structure).

• Trust that God will provide the “right” job that fits our present needs and circumstances.

Thanks for standing in the gap for us. For all those who have supported Bryce, thank you! You have all been such a blessing and inspiration to us and we delight in gratitude for your love, sacrifice, and generosity.

With gratitude and in Him,

John

Bryce’s webpage: http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/815E84D4-9B4D-12A9-3B8B55A769EC3F1C

December 20, 2009

Dad's Update XIII - 12/20/09

XMAS 2009 update

Our days often start with a groan and/or a worry, but we reach for His Word and truths pop out at the right time.  The following verses kept showing up over the past two weeks.  They remind us that God has a plan, one far greater than we can see right now, and to take one day at a time…..

Because of the Lord's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness.  (Lamentations 3:22-24)

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.  (2 Corinthians 4:7-9)

“Please excuse me, I’ve got to do some research,” said Bryce.  He backed away from the table and rode out the front door of the atrium into the dark, cold night.  The doors shut automatically as he wheeled around to face us through the doors, and just sat there.  “What in the world is he doing,” I thought?  Yet, I continued on with my discussion with Jennifer.  After a few minutes, he suddenly appeared affirming, “the beers will be just fine” – the American micro beers his Mom had purchased in Luzern were chilling on his room porch!  We laughed out loud, welcoming the thought that some of the old normal was coming back; I was chuckling to myself…..chip off the old block……..

Back to the USA

Bryce is returning to America soon!  I had toured Craig in Denver and Shepherd in Atlanta on my way over to see Bryce in Switzerland last week and presented my findings to Bryce.  Despite the SPZ’s “Top Gun” facilities, rehab program, and lots of recent progress, I supported Bryce’s decision to transfer to Craig Hospital in Denver for further rehabilitation.  Friends at Colorado College and his yearning for U.S. culture drove his decision-making.  A mid-January return is likely for an expected 90 day rehabilitation period.

Bryce

We met with the SPZ team last week in Switzerland to get a full update.  Bryce is doing very well with good normalization of his skin, internal system workings, and psychological position.  He has started eating by himself with his right hand and is beginning work on teeth brushing and writing.  The left arm continues to improve in strength and wrist movement with full recovery expected similar to the right arm over the next 6-12 months.  The neck collar just came off, which will allow more aggressive physical, occupational, and recreational therapies to begin.  We also learned the exciting news that Bryce’s triceps are showing some action, a C7 accomplishment!  This is a huge answer to prayer, giving us hope that perhaps his fingers might reactivate some day.  Debate continues about whether to shift to full manual wheelchair (hard work without full use of both arms) or use an electric one; we’ll see where that goes over time.  It is now highly probable that Bryce will be able to drive a specially equipped van in the future.  His rehabilitative goals and expected outcomes include: independent transfer between bed and wheelchair, turning, sitting, and lying down in bed, and using a manual wheelchair.  Despite these good expected outcomes, Bryce still will need home aid care for certain hygiene and dressing activities.

Please pray for his triceps and fingers to activate powerfully and for all of our Switzerland-US transportation planning pieces to fall into place.

Meg

Meg continues to improve physically from her blood clot surgeries and is gaining walking strength.  Her surgeon confirmed that her clot has cleared from her navel to her groin.  But from her groin to her left knee, the vein is thin, scarred, and remains partially clotted.  She developed a parallel vein in her left leg to compensate for the clotted one.  The whole process was quite scary; lingering worries pop in our thoughts from time to time, but the blood thinning therapy seems to be working well and doctor visits suggest everything is ok.  We will know better the status of her clots after six months of coumadin treatment.  We also realized she survived a pulmonary embolism last July, which we thought was Swine flu!

Please pray that Meg’s body will eradicate her clots over time so that no further complications arise.   Many thanks to all who spent time with her while I was away in Switzerland.  

Keefe

Great news on Keefer!  While he did not get a Congressional nomination to The Naval Academy this year, he was accepted for deferred admission next year through their Foundation program (essentially a prep school PG year).  The Navy crew coach will coordinate with Keefer as to which school, but it is likely to be a crew powerhouse.  We are all very proud of Keefer’s accomplishment.  He arranged his entire application process himself, weathered three Congressional interviews, and finished up his fall term senior year strongly at Taft, all while suffering through stresses related to Bryce.

Thanks for all the prayers for him through his process.  It has been yet another answer to prayer and perhaps a better way to start with The Naval Academy.

Final thoughts

Needlesstosay, I am exhausted from keeping up with travels to Switzerland, fundraising and trust activities, Meg’s medical issues, and various networking meetings and job interviews.   Yet, things are leveling out and we are expecting a more stable and predictable 2010.  Fundraising activities will kick off in 2010.  For those of you who would like to support Bryce in 2009, the attached sheet can be used for tax deductible 501c3 contributions.  For other information, links to his blogspot and Facebook, and pictures, please use the link below:

http://www.transplantfund.org/find-a-patient/profile/index.cfm/patient/815E84D4-9B4D-12A9-3B8B55A769EC3F1C

May God bless you with a very Merry Christmas.  Please know how thankful we are this Christmas for your friendship, support, and prayers.  We have been astounded by the outpouring of love and caring from both friends and strangers and look forward to closer relationships with our new family of friends in the SCI (Spinal Cord Injury) extended network next year.

Amidst our suffering, anxieties, and frustrations, we continue to rely on His light and His promises………

The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned………..For to us a child is born, to us a son is given, and the government will be on his shoulders. ?And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.  Of the increase of his government and peace there will be no end.  He will reign on David's throne and over his kingdom, establishing and upholding it with justice and righteousness from that time on and forever.  The zeal of the LORD Almighty will accomplish this.  (Isaiah 9:2, 6-7)

In Him,

John