2/1/12
Bradley started the day with routine labs. After his labs were done, he saw the Physical therapist & Nutritionist. In radiology, he had X-ays of the Thoracic/Lumbar spine & the Rt. Ankle which has been bothering him since the beginning of January. He sprained it 2 years ago after slamming his foot into a tree while sledding. Then we had pulmonary function testing to check his breathing.
Physical Therapist-The PT noticed he is tighter in his upper arms & hips, but his muscle strength is stable. She added a new range of motion exercise for his upper arms that he can do by himself or that Tom can do. Tom does all the stretching for Bradley because he is stronger and is able to get a more effective stretch. Recently Bradley has been resistant to stretching and wearing his AFO's (night splints) since his R. Ankle started flaring up. She also recommended that his 2 year old AFO's be replaced.
Nutritionist- She was happy to see Bradley is maintaining his weight and is now above the 50th Percentile on weight. He was just below the 75th percentile in July, 2011. He still has not grown in height at all. He has been 4'10" since June, 2008. He is now just below 1 % on the growth chart for his age. His BMI is above the 95th percentile, but the team is more concerned about his weight & height alone instead of together. She also stated that with his growth failure in height, his is a special circumstance.
2/2/12
Neurologist-Dr. Rybalsky recommended that Bradley see an Orthopedic doctor about his right ankle. The X-ray report showed some abnormalities involving the talar dome but there were no fractures. She also highly recommended that Bradley have serial casting again, if the orthopedic feels it will not cause further problems with the right ankle problem he is having. She strongly encouraged Bradley to do all of his stretches and to wear his night splints. His lumbar/thoracic x-rays were fine-no new compression fractures.
She was very pleased with his muscle strength and she was happy that he is still walking at his age of almost 15 years. She is hopeful that he could walk until 17 or 18 now. It took him longer to walk 30 feet, get up from sitting on the floor and walk up and down stairs but she could tell this was because of the pain in his ankle and the guarding of his ankle during the tasks.
Endocrinologist-She was also very happy with Bradley weight, blood glucose levels, and diet efforts. She feels the metformin is working very well, keeping his glucose and insulin levels in range. He has steroid induced insulin resistance/diabetes.We talked about Human growth hormone but since Bradley is okay with his height. He doesn't think it is worth it for 1-2 inches in a year which would not be guaranteed.
Social Worker-The social worker talked to us about Bradley's future. There is a program that the hospital has to prepare him for college, and a career. This will be available during his Junior year. He will also be able to get Social Security Income without consideration of our income once he turns 18. He should apply when he is 17 1/2 years old. She said he would be approved automatically because of his diagnosis of Duchenne Muscular Dystrophy.
Pulmonologist-He was very please with Bradley's lung function and breathing. He said he had a very good sleep study in July which showed no signs of sleep apnea. He did have a few episodes of prolonged ventricular relaxation but this can even happen in healthy people and is not really a problem. He said his pulmonary function test results were excellent. He still wants Bradley to do his breathing exercises frequently everyday.
We did not see the Cardiologist this time because his Heart MRI showed that his heart function was good. Bradley will have another Heart MRI next summer and he will also see the cardiologist.
Bradley will see the Orthopedic on Feb. 13th in Mt. Vernon. This is the same one who did his serial casting in July, 2008.He was the closest person we could find to do the serial casting at the time.
The casting was done over 11 days with cast changes to his lower legs every 3-4 days. With each cast change, his ankles would be positioned with a little more of a stretch in his heel cords.
They have changed the protocol to weekly cast changes. The whole procedure is done over 2-4 weeks. The tough part is that he will have to be in a wheelchair during school which means they would have to make sure someone can push him in the wheelchair. (It is not recommended that a child with Duchenne wheel himself around-it wears out the arm muscles).
