Welcome to our CaringBridge site. After years of medical issues, we'd like to keep our family and friends better informed. Our site will include updates about David's Multiple Sclerosis (MS) and Connor's Cerebral Palsy (CP) and other family news. David will be taking a new MS medication and Connor will need another surgery....read more below and view our photos!
David's MS Info
David was diagnosed with MS in 1999. MS is a disease of the central nervous system (CNS). The CNS consists of the brain, spinal cord, and the optic nerves. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps nerve fibers conduct electrical impulses. In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. Wherever this happens in the CNS, the function controlled by that area is affected.
Symptoms that David has experienced for weeks, months or permanently include;
BlindnessArm and leg numbnessDifficulty walking and balancing Vertigo (dizziness) Extreme fatigue Tremors Depression Irritability Short term memory issues Attention Organization Decision making Problem solving Personality changes
David's MS worsened in 2005 when he became immune to his self-administered injection medication (Rebif). He is currently on quarterly chemotherapy treatment (Novantrone) and will finish the two year course this fall. He will then start a newly introduced infusion (given through an IV) medication called Tysabri. Tysabri went on the market for a very short time and then was taken off of the market since some people died while using it. They think they figured out why and it is now back on the market....but it still makes me nervous. David's chemotherapy treatments have helped. He has recently started to work and is currently working a few hours per week at a local golf course.
Connor's CP Info
Connor was born with his CP but it wasn't diagnosed until he was about 1 1/2 years old. Connor was 7 weeks premature and was hospitalized for 10 days and on a respirator at birth. He has had several surgeries and intensive physical and occupational therapy. His surgeries were at the ages 4 (6 weeks in the hospital for a spinal cord nerve surgery), age of 5 (orthopedic surgery with 6 incisions on legs/feet to correct muscle and bone issues including cutting and turning femur bones to help align his legs) & age of 6 (another orthopedic surgery to cut and turn tibia bones to help align his legs). Each of the surgeries required a wheelchair and lots of therapy. At age 7, he broke his back (a vertebrae in his spinal cord) and was in a wheelchair for the 4th winter in a row. Since that time, he's been a pretty average, active kid with lots of trips to the doctor and some accommodations at school. We've just found out that he'll need a knee surgery in the next couple of years...one more winter in a wheelchair. Connor says he can't do it in the summer since it's no fun to be in casts in the summer if you can help it!!
Other Family Stuff
David's disease has greatly affected our family. Along with all of his terrible symptoms, David has gone from being a dad who goes to the park, plays in the yard, coaches t-ball and has great fun with the kids to a dad who often doesn't make it through dinner with the family. He frequently goes to bed exhausted by 6pm and is often unable to attend kid's activities due to the fatigue related to MS. However, in spite of his disease, we still work hard to do fun family activities together and to allow our kids to develop their talents and abilities through extra-curricular activities.
We've become involved with the MS Society and have gone on a number of MS Society 'getaways'. We also attended a Camp Courage Family Camp last summer. It's really awesome that there are great organizations to support families with disabilities. It's also nice to connect with other families who are living with similar issues.
From an activity standpoint, the kids keep us very busy. Connor (age 13) focuses on music and golf. Connor has been asked to sing at the opening of the MS Society Annual Convention in Minneapolis this fall!! Go Connor!! Colin (age 9) plays hockey and lacrosse. Maddie (age 6) and Gabby (age 5) have started a cheerleading class (yes, we gave in to cheerleading) and want to learn to ice skate this winter. Charlie (age 2), along with the rest of our kids, loves swimming at the YMCA! The kids also develop their swimming skills at grandma's lake and we love visiting with grandma in the summer!! This summer they even learned about insulating...as we helped to insulate grandma's new 'bunk house'!
THANKS to our Caringbridge Sponsor!!
Gillette Children's Specialty Healthcare is Connor's primary clinic and hospital for his Cerebral Palsy. We've included them as the Caringbridge sponsor since David (thankfully) hasn't yet needed hospitalization with his MS. Gillette Children's has provided outstanding care and set high expectations for us in health care providers.