Dad's Update XVII - 3/26/10

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 braff68@gmail.com. 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