Hello Again to all my faithful friends and family!!!
I posted a short Facebook update yesterday on the muscle biopsy results, but I will go into further detail.
First of all the biopsy showed an increase of mitochondria in his muscles. This can be and indicator of a muscle disease, but when they went in and analyzed the mitochondria make up, they appeared normal. A good assumption would be that there are an increased number because the muscles are needing the increased energy to function. Which is common, like when the body produces more white blood cells when you have the flu. There were some other abnormalities in the muscle, IE. in fibers 1 and 2.... These are details that go way above my head, however the muscle disorder neurologist is requesting a few more test to be conducted on the muscle, one of them being a die test to check the collagen levels.
Because this muscle biopsy was, for the most part, inconclusive. We are going to continuing further test. If you all remember that in previous MRI's Coopers' L1 vertebrae was giving off a different color then the other vertebrae. We did the bone biopsy which came back normal. We are going to do another MRI and CT scan on the spine to see if there has been any changes. Also, we will go back to rheumatology and we may put him back on Naproxen, which is an anti inflammatory to see if there it helps him as it did last time.
Unfortunately with chronic problems such as Coopers, cancer is still a concern. We also see hematology again, and see if they have any suggestions or concerns. Along with this long list of doctors, we will be seeing a nutritionist, because Cooper has not gained a pound since all of this has begun. He has been 30lbs for over a year now. We will also be seeing gastric intestinal doctors as well.
In the mean time we have contacted Johns Hopkins and are in the process of obtaining an appointment with them. Also, the doctors told us about an undiagnosed muscle disorder research study being conducted in Boston. We are going to call today to see if Cooper is a candidate, if so they will work with Texas Childrens to obtain samples and we do not even have to go to Boston to be apart of this study.
We begin another round of physical therapy this Friday as well.
So basically, the doctors said we will start back to the beginnign of testing to see if anything has changed.
Cooper is an amazing little boy! He has no fear in the doctors office and lets them check his legs, feet, arms, weight, height, blood pressure, and if they ever don't look at something that they normally do, such as his temperature, he tells them "Okay now take my temperature." We are lucky to have such a calm and understanding kid. I sure hope we can figure all of this out, before his patience runs out.
Thank you to everyone who has given us a kind thought and have sent prayers up for Cooper. Please keep praying and hoping!
The Cannon Family (especially Cooper)