Since Bradley is continuing to experience pain with his right ankle, I decided to contact his neurologist, Dr. Rybalsky in Cincinnati to ask her opinion about the surgery the orthopaedic in Springfield explained to us. I let her know that Dr. McGinty told us he likely has avascular necrosis (AVN) in his ankles.
Dr. Wong (the main neurologist on the DMD team) answered my email letting me know that the surgery described has been associated with decreased mobility in other patients they have cared for. She suggested we have a consult with the orthopaedic at Cincinatti Childrens for a second opinion when we come for Bradley's next set of appointments.
She wants to confirm the AVN with a MRI. She also said she is concerned about continuing steroids if he does have AVN.
So now we are looking at the possibility that he may have to stop his deflazacort. I cried when I read that we may have to discontinue Bradley's steroid, but as the day went on I decided I need to be positive. Even if he does have to stop taking them, there may be some good in that. Maybe his weight and moodiness will improve. Maybe we will see a decrease in problems related to the steroid, such as diabetes, osteoporosis, avascular necrosis, cataracts, and linear growth failure. I also thought about not having the expense of deflazacort, not that we mind spending extra money on anything he needs. I know a lot of the effects will not be reversed but I thought it may be possible to bring some of the damage to a halt.
But the reason for my tears, is in knowing his strength will probably decrease and he will probably stop walking. But I thought of how blessed he has been to walk 3 years more than we had initially expected at diagnosis. Who knows how long God will allow him to walk, anyway. God can keep him walking without steroids, if that is in His plan.
Whatever happens, whenever he stops walking, we have to still trust God to take care of him.
