Dad's Update XVIII - 5/9/10

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 braff68@gmail.com. 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 amandakayspears@gmail.com 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