Bradley's Quote
"Mom, the key to keep walking, is to walk everyday and choose not to give up." quote from Bradley Jones.

Take A Look @ My Turkey

(sang to the tune of Take a Look at My Girlfriend)

Take a look at that turkey; it must weigh a lot

That turkey is juicy; I’m gonna eat a lot

 Take some those deviled eggs; or just take a few

But no they’re so good;I’m hoping for none the gas

But there’s not a lot to do; could you pass me that stuffin’

Please give me some; they gotta be the best tastin’

‘Cause Grandma made them; I’m an eater, I’m a fatty

You don’t want to be like this?

I’m not on “The Biggest Loser."

I’m just a big, fat, fatty; there isn’t a diet on this holiday 

Don’t you look at my fat rolls; they’re hangin’ out my shirt

There’s not much to see here; but my fat rolls

 I need a diet plan; so I don’t eat too much

I wish this wasn’t fat’ning; I hope to lose some weight

But there’s not a lot to do

I woke up the next morning; I guess I fell asleep

On the toilet bowl.

Words by:  Bradley Jones

Cincinnati Children's Hospital Bi-Annual Appointment

We just returned last night from our bi-annual trip to Cincinnati Children's Hospital for Bradley's medical appointments. Bradley's neurologist and physical therapist are pleased with Bradley's muscle strength. They are really amazed by it. They emphasized again the importance of Bradley's stretching exercises and wearing his AFO's every night.

The physical therapist would also like for Bradley to begin wearing his hand splints again because his fingers are getting tight again. Bradley had stopped wearing these because it was really hard to sleep with all of that on. They suggested getting him to wear these during the day when he is just watching television. They suggested also wearing the AFO's some during the day as well.

His bone density has improved after being on fosomax for the last 6 months. He was diagnosed with osteoporosis in January. Dr. Rybalsky hopes this will continue to improve over the next 12-18 months.

His heart MRI showed increased fibrosis (scarring) but the heart function is excellent which means it is squeezing very well. This is with the help of lisinopril and carvedilol.  The fibrosis is a normal occurrence in DMD and she is not concerned. She did not see the need for any increases in heart medication. She also will not need to see him until next summer. She plans to continue Cardiac MRI's annually. MRI's pick up on changes much sooner than an echocardiogram would. In fact these fibrotic changes are not detected by echocardiograms.

His Pulmonary function test results were very good. However, the  pulmonologist said these numbers only represent what is going 30 minutes of the day. He does not know what is happening the other 23 1/2 hours of the day. 

He is noticing a gradual development of contractures in the rib muscles of boys with DMD on chest x-rays. He showed us a comparison of Bradley's chest x-rays in June of 2008 and July 2011. He pointed out how Bradley's ribs were more horizontal in 2008 and how they are beginning to become more vertical now. This is because of muscle contractures around the ribs and over time it will decrease lung capacity. He does not want to wait until we are in trouble 2 years down the line. He wants to intervene now.

He has instructed Bradley to begin deep breathing exercises 15-20 minutes per day. He wants him to breath in as much air as possible, hold it for 3 seconds and then slowly breath the air out, repeating several times. This can be divided into intervals throughout the day but he needs to do this a total of 15-20 minutes daily. He did not have the sleep study results yet but will call if there are any urgent concerns. Otherwise, he will discuss the results when he sees him in 6 months.

Bradley is still not growing. He has been 4'10" for the last 3 years and is now well below the 5th percentile in height. Because he is not bothered by this right now, we plan to wait it out and see what happens. There would be some side effects to consider with growth hormone therapy and we feel it is not something we want to pursue at this time. 

Bradley had lost a lot of weight at this last visit and over the past 6 months he has maintained his weight. He was above the 95th percentile a year ago and now he is just a little below the 75th percentile. They are very pleased with Bradley for his efforts. The metformin for steroid induced diabetes/insulin resistance has helped with his weight and appetite. Bradley has also done a great job keeping his intake of sweets down and making healthier diet choices.

Our Story in Saving Our Sons Book

July Events

HAPPY 4TH OF JULY!!

We are getting ready to celebrate Independence Day tonight; one day early. We are going to have lots of family over for a cookout, then later we will be shooting off fireworks, many of which will be very colorful. It is our annual tradition.

Next week will be busy. Our church is partnering with Dutch Ridge Baptist Church for Vacation Bible School. It will be a real challenge Monday-Wednesday to get off work at 5:15 and drive 30 minutes from work to the church to help out. I'm glad to have time off from work on Thursday & Friday. Our first night will be next Sunday, July 10th. Bradley will be a VBS student and the rest of us will be helpers.

The following week, we will be leaving on the 18th for Cincinnati. Bradley will have 3 days of appointments at Cincinnati Children's Hospital.

Our first appointment will be Tuesday morning. He will be in a research study called, "Quantitative Magnetic Resonance Mapping of Gluteus Muscle as a Quantitative and Objective Measure of Disease Activity in Children with Duchenne Muscular Dystrophy." They will do a MRI of his thighs, buttocks, and muscle surrounding the right knee. The purpose of the study is to compare muscle tissue between boys w/ DMD and boys w/o DMD.

Later in the afternoon, we will see the nutritionist, the neurologist, and the physical therapist. At 6pm, we will report to the sleep lab for Bradley's sleep study.  I will be staying with Bradley overnight during the sleep study and Tom and Stephanie will stay in the hotel. They provide a chair with a pull out bed for a family member but it is hard to get any sleep and the room is extremely cold.

As soon as we are released from the sleep lab, we will report to lab for fasting blood work. After that, Bradley will have appointments for pulmonary function testing, EKG, full body bone scan, radiology procedure (probably a bone age test), and a cardiac MRI.

On the third day, he will see the Endocrinologist, the Cardiologist, and the pulmonologist. Wow! I'm tired already just thinking about how busy we will be. But it is worth it all, because we know we are getting excellent care in Cincinnati.