Bradley's Update from Cincinnati Appointments

It has been awhile since I updated the blog.

We went to Cincinnati Children's last month. Bradley's muscle strength tests were very good. The doctors continue to be amazed that Bradley is still walking. Because he only uses a manual wheel chair for long distances on occassion, he could very well continue to walk for another 2 years. This is such a miracle! I thank God for what he is doing.

We did get some bad news this time concerning Bradley's heart. His ejection fraction of the left ventricle decreased from 56% to 47% in a little over a year. This is a significant drop in heart function. It has been anywhere from 56-57% with lisinopril and carvedilol. Now he is on a third heart medicine called aldactone. This is a aldosterone blocker that works as a diuretic.

He was going to be in a study for a similar drug called eplerenone. The doctor doing the study actually called us with the MRI results letting us know his heart function was too low for him to be in the study. He would in fact need treatment with a similar drug (aldactone). It was hard getting the results, but it was caught early.

They sent Bradley home with a 24 hour Holter monitor to check his heart rate and rhythem. This test was normal.

They also advised us to find a cardiologist close to home, in addition to his cardiologist in Cincinnati, so Bradley would have someone to take care of any heart problems that may arise in between our visits to Cincinnati. We also need to have a plan in place in case emergencies arise.  We found Dr. Soto in Cape Girardeau, MO. He will see Bradley on December 27th.

 Bradley's ankle problem has continued, but the MRI confirmed he does NOT have Avascular Necrosis. He does have a lot of degenerative changes and evidence of injuries in both ankles. They gave us two treatment options, a cortisone injection or fusion of the ankle bones.

We plan to take him back to the orthopaedic in Springfield, IL to see if that doctor will give him an injection. It will probably have to be done in the OR and guided by X-ray. This is the recommendation of the Orthopaedic in Cincinnati. The orthopaedic in Springfield that saw him before is no longer there, but Dr. Gabriel has taken over all of her patients. Hopefully, they will go along with recommendations from Cincinnati.

Stephanie & Kyle

Stephanie is starting her second year of college. She has decided to go into Elementary Education and will continue taking General Studies and get her Associate Degree at Shawnee College. She is taking 5 classes this semester.

Stephanie has someone new in her life. His name is Kyle Hines. He is from Texas originally and is currently stationed in the Air Force in the state of Washington. He will be there for the next 4 years. He has been in the Air Force for 6 years.

They have been talking to each other since November, 2011, but came to realize their relationship was more than just friendship in April, 2012. We met Kyle on Skype a few times. He also attended our Tuesday Night Home Bible Study twice on Skype. He actually participated and you tell he was knowledgeable about the Bible and being a Christian.

He spent a week of vacation here earlier this month, so that he could spend time with her and meet her family. He started the week off by surprising Stephanie a day early on her birthday. She was speechless when I took her to Dairy Queen and he appeared from around the corner. One of the girls at Dairy Queen recorded a video as we all walked in.

While Kyle was here, I was impressed by so many things. He had great manners and was a gentleman. Every morning he would come help Stephanie with her chores before they would spend the day together. He was always willing to help any of us out and offered his help many times.

He and Stephanie even helped us in the Cobden Peach Festival parade, when we needed two people to carry the Marching Appleknocker Banner. I had posted a request on facebook looking for banner carriers. He saw it and texted me, asking if we still needed banner carriers. He and Stephanie came to the rescue and carried the banner through the parade.

He was always willing and happy to spend time with Stephanie's family and get to know all of us. He had supper with Stephanie's immediate family several times and even took us out to eat one night. He met some of Tom's family at our weekly Home Bible Studies. He also spent time at my parents' home one night.

While he was here, he attended our Tuesday night Home Bible study twice, he attended my parents' church, and he attended our church at Noel. He didn't just attend, he participated in discussions.

Stephanie and Kyle really love each other and believe God has brought them together. Although things are not official yet, they plan to get married more than a year from now.

Bradley

Bradley will be starting his Sophomore year of High School tomorrow. He will be in the Marching Band again and he will start Driver's Education.

I will continue to push Bradley in all of the parades. He loves being a part of the Band and I want to do everything possible to allow him this opportunity. When I push him in the parades, I have a great sense of pride in my son and I am thankful to God for making it all possible.

Driver's Education and Driving are milestones that every teenager hopes to reach. This is one thing we were not sure would be possible for Bradley. Our expectation was that he would need special accommodations requiring hand controls to drive, something he will still need eventually.

This year also brings questions about his mobility. As he gets older, we are noticing that he is gradually declining. Our current challenge is the diificulty he is having with walking because of the pain in his ankle. We are waiting to confirm a diagnosis of avascular necrosis (the breaking down of bones in his ankles due to lack of blood flow-most likely caused by long term steroid use). That MRI will be done next month.

We anticipate the possibility that he may have to stop his steroids (the gold standard for slowing or maintaining muscle strength in Duchenne Muscular Dystrophy). If steroids are stopped, we anticipate a faster decline in mobility. Of course, the steroids will be decreased slowly before being stopped completely. But still, things could change significantly for him. We may be looking at a power wheelchair in the near future.

But then again, Bradley has already beat the odds. He has fought hard with determination and inner strength from God. And God has given him almost 3 1/2 years more of walking. God has been good to Bradley and to us. I praise God for that!

May Have To Stop Steroids

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.

Last Day in Gulf Breeze and Trip Home

On Friday, we visited the Gulf Breeze Zoo. It was very expensive but it was a nice zoo. For the four of us to get in, ride the train, buy animal food, bird food sticks, and rent a wheelchair was $96. But it was really worth it. We really enjoyed having the birds land on our sticks. Sometimes we woud have three birds on our arms as they tried to get the food on the stick. We also got to pet and feed a lot of the animals.

After going to the zoo, we stopped at a clothing store. Tom wanted to buy me a nice outfit but I just couldn't find anything that I liked or looked good on me when I tried it on. It was comical, because Tom and I had different ideas on what shirts and tops matched with each other. In the end, though, I felt bad that I couldn't find anything because Tom really wanted to get something nice for me to wear.

We went back to the beach house for the afternoon and ate sandwiches for lunch. For supper, Tom grilled handburgers.

After supper, we went to the beach and took family pictures. Stephanie and I left after the pictures so we could finish our laundry and get things packed for our trip back home. 

Some of them stayed at the beach and they took pictures of Bradley being buried in the sand. He really enjoyed that.

Around 8:30pm that night, we realized that it was getting warm in the house and the air conditioner was not working. Wade called the owner and gave the phone to Tom to explain what was going on with the AC. The owner explained that there was a pan that fills with water and once it fills up, it has to be emptied. Tom looked at it but did not have the tools to get to the pan that the owner was telling him about. He told Tom he could send someone out to fix it but it could be as late as midnight when he may arrive to work on it. Tom decided we could wing it with fans on our last night, so that is what we did. We told the owner he would not have to worry about it until the next day since we were going home.

It was a very hot night. The next morning, we were all up early because of the heat. Some went to the beach very early before others got up, and came back to do their final packing after we were up and ready to depart. As we waited for them, we went outside on the deck where it was cooler. I didn't even bother to put make up on until we were on the road in the air conditioned van, because I knew it would just sweat off when I put it on in the hot house.

We went through Mississippi on the way home. For lunch, we stopped at Dairy Queen. When we went inside to order, everything looked just like any other Dairy Queen and even the menu board above looked the same. But when we got our food, a lot of things were not like other Dairy Queens. I ordered a BBQ sandwich and it was very running with pieces of meat. At other Dairy Queens, it is mostly shredded meat mixed with BBQ sauce. It didn't even taste the same. I was very disappointed.

As we left, I got a refill to top off my drink for the road. I sipped on it for some time and finally only had ice left. I like to take my lid off of drinks and eat the ice. Well I opened it up and found a fly at the bottom of the cup with the ice. I was so grossed out!

For supper,we stopped in Sikeston, MO. at Subway. That was a much better experience that what we had at Dairy Queen.

When we got home, we picked up Sky from her babysitter/groomer. We thought it would be better to board her during the trip, which probably was the best idea since we were with other people. She was so happy to see us when we got there to pick us up.