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Jones Family Blog
Wednesday, 12 June 2013
Bradley's Race To End Duchenne: Success!

I want to thank all who contributed in any way to Bradley's Race to End Duchenne. Through this event, we were able to raise awareness for Duchenne Muscular Dystrophy and funds for Parent Project Muscular Dystrophy. We raised over $11,000 Gross (and over $9600 Net). Here are some pictures from the event.

 

                                                                        


Posted by jonesfamily91 at 8:05 AM EDT
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Monday, 29 April 2013
Press Release for Bradley's Race To End Duchenne

For Immediate Release: April 24, 2013 Contact: Lisa Jones, (618) 697-4194, jonesfamily91@msn.com

 

LOCAL FAMILY FIGHTS FOR A CAUSE CLOSE TO THEIR HEART AND HOME

 

Cobden Family Hosts a 5K Walk/Run and Silent Auction to Raise Awareness and Funds for Duchenne muscular dystrophy

 

Cobden, Illinois – Sixteen year old Bradley Jones is a fighter. And the name of his toughest opponent is Duchenne Muscular Dystrophy (Duchenne). When Bradley was three years old, he was diagnosed with Duchenne, a progressive muscle disorder that causes loss of muscle function and independence. However, with the spirit of any good fighter, he lives life to the fullest, surrounded by the love and support of is family and community.

 

On June 1, 2013, Bradley’s family and friends will host a 5K and silent auction at the Cobden Community Park to raise awareness of Duchenne, a little known and often misunderstood genetic disorder, and to raise funds on behalf of Parent Project Muscular Dystrophy (PPMD).  PPMD is a national nonprofit organization started in 1994 by parents of young men diagnosed with Duchenne. The Jones family is actively involved with PPMD and hopes to inspire the Southern Illinois community to come out, have fun, and make a generous contribution in support of Bradley and PPMD.

 

“We want everyone to know more about Duchenne muscular dystrophy and how it affects people in our own neighborhoods and communities,” said Lisa Jones. “Our 5K and silent auction is a fun way to raise awareness, however, the purpose of the event is very serious because much more research is needed to fight this disorder.

 

About Parent Project Muscular Dystrophy

Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy’s mission is to end Duchenne.

 

We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite, and educate the global Duchenne community.

 

Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. 

Go to www.ParentProjectMD.org to learn how you can support our efforts and help families affected by Duchenne.

 

Interviews Available

The Jones family, Parent Project Muscular Dystrophy executive staff, and experts on Duchenne muscular dystrophy are available for interviews.

Event listing details:

Who: The Jones family (and any other community partners)

What: Bradley’s Race to End Duchenne

Where: Cobden Community Park on Locust street in Cobden, Illinois

When: June 1, 2013 9:00am to 2:00pm

Why: To raise awareness and money for Duchenne on behalf of PPMD

 

Additional Info: For more information about the event, please visit www.parentprojectmd.org/bradley 

Top Sponsors for the event include Farmers State Bank of Alto Pass and Wade Dover Construction, LLC. ###


Posted by jonesfamily91 at 12:51 PM EDT
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Friday, 29 March 2013
Cincinnati Children's Visit-March, 2013

Bradley’s visits to Cincinnati Children’s Hospital went well this time. The doctors are so amazed by his muscle strength and ability to walk at the age of 16. He is getting tighter in his hands and hamstrings, so he will have to start the hand splints again.

 

They are concerned about his ongoing right foot pain. They gave us some suggestions to take to the local orthotist. They also suggested we get a scooter from the MDA loan closet, if they have one, just to save him a walk from the high school building to the grade school building where the cafeteria is located.

 

Bradley's cardiac function is holding steady. The left ventricular ejection fraction on the echocardiogram was 48%. We are increasing the lisinopril and aldactone dosages to get the optimal therapeutic dose.


Posted by jonesfamily91 at 12:01 AM EDT
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Saturday, 6 October 2012
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.


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Tuesday, 16 October 2012 4:35 PM EDT
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Thursday, 16 August 2012
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.


Posted by jonesfamily91 at 7:54 PM EDT
Updated: Friday, 17 August 2012 8:10 AM EDT
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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!


Posted by jonesfamily91 at 7:42 PM EDT
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Wednesday, 11 July 2012
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.


Posted by jonesfamily91 at 9:06 PM EDT
Updated: Thursday, 12 July 2012 11:08 PM EDT
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Friday, 22 June 2012
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.


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 8:13 PM EDT
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Thursday, 21 June 2012
Parasailing

On Thursday, we went parasailing over the bay. It was so much fun and it only cost $40 per person. Wade and Beth went first, then Norma and Gary, then me and Tom. Stephanie, Bradley and Kennedie went together last. It was really neat being up in the air above the water. It was neat to see all of the surrounding area. Tom actually spotted our beach house while we were up there.

We went back to the beach house and relaxed the rest of the day. We had sandwiches for lunch. Stephanie and I took a swim in the pool at the beach house. Stephanie decided to lay in the sun by the pool and got a bad sunburn.

 

That evening, we went to Peg Leg Pete's for supper.

After supper, we came back to the beach house. While some of them went to the beach to swim, Stephanie and I decided to walk to the pier again. This time, we walked on the side roads around the beach houses and then on the main road to get there. There was a side walk almost all the way there. Before making the walk, I decided to reset my pedometer. By the time, we got back the pedometer read 8800 steps. I think it was about 3.5 miles altogether.


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 8:11 PM EDT
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Wednesday, 20 June 2012
Mobile, Alabama

On Wednesday, we drove to Mobile, Alabama to see the Battleship and Submarine. We spent the entire morning at this location and got to go inside the battleship and the submarine. They also had buiding with aircraft and other military items inside. We enjoyed what only what was on display but the air conditioning in this building.

We drove to Meaher State Park for lunch. We found a nice picnic area with a small playground and had sandwiches, chips and other snacks. As we were eating,we noticed there were no trashcans anywhere. There was a bathroom across from us so we decided to gather our trash and take it to the bathroom. There were a few staff personel sitting outside the bathroom doors and they saw us with our trash and took it from us saying, "If you throw trash away, we'll have ants everywhere." Later driving around the park, we noticed there were no trashcans anywhere, which seemed a little strange.

Before leaving the park, we went to a pier which had a sign that read, "Don't Feed the Alligators." Some of our group stayed in the car and some walked on the pier. They hoped to see some alligators but there weren't any.

On the way home, we stopped at another Bass Pro Shop where we spent about an hour.

For supper, Tom grilled Chicken breast with Barbecue sauce. We had that with caesar salad. Another great meal w/o spending a lot of money.


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 8:06 PM EDT
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Tuesday, 19 June 2012
Blue Angels, Naval Aviation Center, Fort Barrancas, Lighthouse

On Tuesday, we started the morning off early to watch the Blue Angels Practice at 8am. There was a big crowd there for the event and we got to see some awesome maneuvers in the sky.

After seeing the Blue Angels, we went to visit Fort Barrancas.  It was quite impressive and walk through all of it. The architecture is really impressive. We were so hot by the time we finished that the air conditioned welcome center was much appreciated.

Our next stop was the Lighthouse. They had a picnic area where we had lunch. Everyone went up to the top of lighthouse except for Norma (Tom's mother), Matthew, Stephanie, Bradley and me. We did go through the house/museum.

Our next stop was the National Naval Aviation Center. We had a great tour guide, who had flown in a lot of the military aircraft and been in a couple of wars. He was very knowledgeable about the wars and the aircraft.

On the way home, we stopped at Walmart to get more groceries and a few beach items. We bought pork steaks while we were there and had them for supper with baked potatoes. Tom did a great job grilling and it was just as nice as going out to eat at a much less expensive cost.

After supper, we walked down to the beach again. Stephanie started walking along the beach and got this crazy idea to walk all the way to the pier. It was not easy walking on the sideways on a continuous slope all the way down the beach. My feet, legs and hips were very sore by the time, we got back. We didn't quite make it to the pier but we came very close. We made it to this place called "The Dock" which was 1.6 miles from the beach house. I mapped it out on my iphone when we returned.


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 8:41 PM EDT
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Monday, 18 June 2012
Monday-Destin, Florida & Pensacola Beach

On Monday, we got up early and drove to Destin, Florida. We went to Bass Pro Shop and then had lunch at Hard Rock Cafe. I was really thankful that Bass Pro Shop had a wheelchair for Bradley to use.

On the way back to the beach house, we stopped at a smaller pier and beach area where a red flag warning was posted. A red flag indicated dangerous waves, and it is strongly recommended that people do not swim or surf in it. 

We didn't do very much on this day. I think we were just all worn out from being so busy on Sunday. Of course, we did spend some time on the beach that evening and for supper, Tom grilled brats and hotdogs.

After supper, we decided to go to one of the beach stores. Bradley was tired and decided not to go. He stayed at the beach house, while we went shopping and Wade, Beth, Kennedie, and Matty went down to the beach to swim.

While we were at the beach wear store, Stephanie and I bought matching shirts, and Tom bought a swimming suit because he didn't like the other one he had brought on the trip.

After shopping, we decided to go back to the big pier. I was having a craving for ice cream which was right at the pier and then we decided to walk on the pier again. We felt bad for getting icecream but not getting any for Bradley. We kinda figured it would melt by the time, we got it to him. We decided to keep it a secret. Not long after that we got a call from Wade asking if Bradley could go with them to get icecream. It gave us a good laugh.

We walked down to the beach near the pier and walked along the shore. After spending a little while there, we began to walk back toward the parking lot. I was walking up the sand hill near on the beach and loss my balance and fell. I was surprised and embarrassed at myself for being so clumsy but at least I was okay.


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 9:28 PM EDT
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Sunday, 17 June 2012
Sunday in Gulf Breeze, Florida

Sunday was our first full day in Gulf Breeze. We started the day early and went to Fort Pickens. It was a neat place to be able to see and walk through.

We did a lot of walking and stair climbing and it was very hot and humid. Most of us were very tired by the end of the day. It was especially difficult for Bradley. It is amazing that he is able to walk at all being 15 years old and having Duchenne Muscular Dystrophy. So, you can imagine the struggle it must have been for him to walk the long distances, and climb stairs outside in the humid heat.

In addition, Bradley has osteonecrosis in both ankles, but the right ankle is what is causing him a lot of pain currently. (He was diagnosed w/ osteonecrosis in April. Due to lack of blood flow, the bones in his ankles are breaking down and it is causing the bones in his ankles to rub together when he walks. He is in shoes that have a higher heel on the right. This helped relived the bone on bone pressure for a month and then his right ankle flared up again early this month).

For lunch, we had a picnic under a pavillion. After eating, we heard another group of people who had found a snake eating a mouse in the bushes near the parking area. We went over and watched the snake for a little while. Then we walked down the bay. Some of us were thinking about taking a swim but there was a dead fish in the water and it didn't smell too good.

We went to Flounders for supper. This was our favorite place. Not only was the food and service great, but they had a band and the atmosphere was just really great.

After supper, we went to big pier at Pensacola Beach.  it was a quarter mile long so we were able to see deeper parts of the ocean from the pier. There were lots of fishermen on the pier and some of them showed us their catches.

Just as we getting ready to leave the pier, we were surprised to see the Blue Angels fly over us. Tom's brother, Gary was able to quickly get a video which turned out very good

After walking the pier, we went minature golfing. We separated into two groups. Tom was the winner of our group. 

 

 


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 10:24 PM EDT
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Saturday, 16 June 2012
Travel & Arrival to Gulf Breeze, Florida

 

On the evening of June 15th, we left for a trip to Gulf Breeze, Florida with Tom's family. We stopped in Paducah, KY for supper at the restaurant, Olive Garden. The food was great. The salad was the best part. 

We continued on our trip and played Mad Libs and a couple of other road games. (Scavenger Hunt, and License Plates). Some of the mad libs turned out to be so hillarious.

As we were traveling after dark, we hit and ran over this big tire in the middle of the interstate at 70mph. It made a very loud sound, but everything underneath the van was fine. We spent the night in a hotel in Tennessee. Most of us did not sleep well in the hotel and waking up early was not fun. At least, we got to have a continental breakfast before hitting the road again. 

We stopped at the Visitor's Center Rest Area in Alabama, where the Saturn IB Rocket was on display. They also had some other memorial monuments there. It was very nice and we stayed there for at least 30 minutes.

Later that evening after a few traffic jams in Alabama, we made to our destination in Gulf Breeze at the Pensacola Beach. The beach house was beautiful, clean, and comfortable. We even had a swimming pool on the patio behind the beach house.

We went to the beach soon after getting settled in. The beach was beautiful with it's white sand and the water was very clear. 

Tom stayed close to Bradley for a little while, but soon realized how difficult it was to keep him standing as the waves came along knocking Bradley down. For a little while, Tom ventured out further with the rest of our crew and left Bradley with me. Not being as strong as Tom, it was a little harder to keep Bradley standing and a few times, he fell and would have to use a gower maneuver to get up, even though I would help some to get back into the standing position. I realized very quickly he had lost independence since our last beach vacation in 2005.

 For supper Saturday night, we went to a Rotolo's Italian Pizzaria. We ordered a huge pizza and BBQ wings. The service and the food were both great. After eating, we went to Walmart for groceries.

 


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 10:30 PM EDT
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Monday, 11 June 2012
Rt. Ankle Pain persists
Bradley has been in his shoes with the added heel on the right for a little over a month now. Since Saturday, he has started complaining of pain again and he is also limping again when he walks. I really thought the added heel would solve the problem, but suddenly I am not so sure. We chose this option because it was noninvasive. The other option was extensive surgery, that may risk loss of ambulation. It is so hard to know what to do as a parent. I just don't understand why the pain has returned. I find myself wondering how long he will continue walking when I watch his gait continue to change. I have anticipated this loss since his diagnosis. God has blessed him with that ability 3 years more than expected. We are thankful, but realize he could stop walking at anytime. For now, there is only one thing to do and that is to keep praying until God leads us in the next step or the next decision.

Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 10:32 PM EDT
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Wednesday, 23 May 2012
Six Flags Accident/Busy Week

Sunday morning, my husband and children left our home at 7am to make a trip to Six Flags near St. Louis. I decided to stay home since I am not much on doing the rides at Six Flags. I attended Homecoming at my Mom and Dad's church. Our own church would be starting at 4pm that evening, so I decided to leave the Homecoming at 2:30pm.

By the time, I left and started down the road it was about 2:40pm. Realizing it had been awhile since I looked at my phone, I reached for it in my purse and pulled it out. There were several missed calls (beginning at 2:25pm) from my brother in law who was with Tom and the kids, my mother in law, my daughter, and my sister. Then a text message popped up from another brother in law telling me to call my mother in law as soon as possible. My first thought was that something happened to my husband. I think this thought came because there were no missed calls from him. Later I realized he had not taken his phone.

I quickly called my mother in law. She was upset and broke the news to me carefully that Bradley hurt his back on a ride and was being taken by ambulance to a nearby hospital. She was crying and I also began to cry expecting the worse. A lot of "What ifs?" quickly came to mind. Not being far from the church, I decided to turn back. The Homecoming service was still going on, but I walked in, knelt beside my mother and in tears I told her Bradley had hurt his back on a ride and was being taken by ambulance to the ER. My mother stood up and let the church know after my sister finished the solo that I had walked in on. My dad said a prayer before my sister and I left. We were going to make the 2 1/2 hour trip to the hospital. After we had left and the service ended, another prayer was said with everyone in a circle holding hands.

It took some time, before we actually got in our cars and left because of phone calls and developing plans to get there. My daughter had called to let me know more about what was happening. There were some things she didn't know since only Tom could go to First Aid with Bradley. They finally found First Aid and found out that Bradley was being transported to the ER by ambulance. Stephanie and her uncles were very concerned about Bradley. I also had to call my other sister to ask her to pick up the main dish I had prepared for our after worship dinner. I spoke to another of our church members and she said a prayer over the phone. There was a lot of praying going on.

Once we finally got on the road, my husband called on my daughter's phone and told me they were at the hospital and Bradley's condition had improved drastically and he was able to laugh and be in good spirits. They were waiting to see the docttor and waiting for X-rays to be taken. He told me Bradley had walked since the incident and he was laughing and in good spirits. He said it would be best if I just waited to see how the X-rays turned out and what the doctor said. I agreed to wait it out. It was so hard waiting, even knowing that Bradley had walked and was laughing by then.

Finally around 5pm, we got the news that Bradley's X-ray was clear and he was being discharged. It was such a relief and I felt it was an answer to prayer. Tom also told me the doctor said there were no signs of old compression fractures. I was puzzled, was this just something they missed or was this a miracle? I still don't know. I do plan to get a CD of the X-rays for his next trip to Cincinnati.

Once Tom and the kids made it home after 9pm, and we were getting ready for bed, Tom told me everything that happened. Bradley's had felt something pop in his back half way through the ride and it was extremely painful. When the ride stopped he had a terrible look on his face. It was one of intense pain and fear. First Tom told him he would need to stand up and get out of the seat but he said it hurt too much to move. He finally stood but Tom had to lift him to get him out of the Screaming Eagle Seat. Bradley actually did walk but his back was bent forward and he was very short of breath. He said it hurt really bad to breath. He walked over to a wall and stood there allowing the wall to support him. The attendants for the ride called First Aid to the scene. They had to help Bradley down a bunch of steps and Bradley said that was very painful. They put him on a board and took him to the First Aid center, then an ambulance was called and he was taken to the hospital by ambulance. Once he got to the hospital, he was doing a lot better. Tom said it was around 2pm when the incident occurred.

I am so glad Bradley is okay. It was a very scary ordeal. Initially, the unknown caused great fear and emotion. Bradley has been gifted with the ability to walk far longer than expected with his DMD. Anything could set him back and at first I really thought this would be the end of his walking days. But God continues to work and amaze us in this area.

We did take Bradley to the doctor this morning because we were told to follow up with a doctor. Also he is still sore, but this will probably continue for a couple of weeks. The doctor said she would order a muscle relaxer for an adult but it would not be appropriate for his age. She said to contiinue ibuprofen but it could be given every 6 hours.

Bradley also had an opthalmologist appointment today to check his cataracts. I was happy to hear his cataracts have not worsened this time. His vision has changed but we just had to get him new glasses. My new VSP vision plan really helped a lot on the cost of everything. I had almost forgotten about the policy effective January, 2012. We only had to pay $93 and I used my Flex Spending card to cover that. Last year, we paid almost $300 for his glasses and the vision exam. Then the medical part (follow up on the cataracts) went through his medical insurance last time.

I am really looking forward to Friday. Tom and I will be celebrating our 21st Wedding Anniversary! We plan to go out for dinner at Lone Star Steak House and to see a movie. I am going to leave an hour early from work.

Saturday, we will be going to Spring Fest in Alto Pass. Tom is going to be volunteering in the dunking booth. That should be fun to see!! The kids and I will just walk around, see people in the community, and check out the vender tables.

We will be having an all day church retreat on Sunday at the House Church we attend. We will have a few sessions, worship, fellowship, and enjoy the food. We plan to have a cookout at the end.

Monday will be Memorial Day. We will be remembering the men and women who have served our country, those who have died and served for our freedoms, and those who are currently serving. Thank you to all those who have served and sacrificed for our country!


Posted by jonesfamily91 at 10:22 PM EDT
Updated: Monday, 9 July 2012 10:34 PM EDT
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Wednesday, 25 April 2012
Stephanie & Bradley

Bradley had a Spring Band Concert last night. The 5th & 6th graders, Junior High and High School Bands performed. They all did an excellent job and sounded great.


 

On Friday, the Junior High and High School Bands will be going to Six Flags. I will going as a chaperone so I will be able to push Bradley in his wheelchair. I dread pushing the manual chair on all the hills but I think it will be good exercise. Tom is usually with us on Six Flags and Zoo trips. I know it will be worth it to go and watch Bradley enjoy it.

Next Friday, we will be going to Springfield to see the Orthopaedic again. He will also get his new shoes with the extra heel added to the right. This will relieve the pain of the bones rubbing together as he walks and hopefully he will be able have better balance. Hopefully this will work so we don't have to go the surgical route.

Bradley's IEP Meeting is also on May 4th, but there is no way that Bradley and I can make it with a 10:45 appointment in Springfield. Since Tom will be able to make it, I decided not to reschedule it.

One of the big things that will be different next year is Driver's Education. It's hard to believe we have reached that point but he will be able to get his Driver's permit since he is 15 years old. We really didn't know if Bradley would be able to drive normally, because we didn't think he would still be walking by this time.

Stephanie will soon be wrapping up another semester of college. She is taking Introduction to Education and is currently doing her field experience for the class. She is doing this at the local grade school. She was really happy to get Kindergarten. She did not specify which class she would like to work with but really wanted Kindergarten. It's amazing the way that worked out.

Stephanie is working on a degree in Early Childhood Education. After she gets her Associate's degree, she can teach in preschools and daycares. If she goes on, as planned, to get her Bachelor's degree, she will be able to teach up to 3rd grade. I am encouraging her to do this.


Posted by jonesfamily91 at 10:29 PM EDT
Updated: Monday, 9 July 2012 10:39 PM EDT
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Tuesday, 10 April 2012
Cataracts and Steroids

Tonight after going to bed, Bradley called me to his room to tell me his cataracts are getting worse. He said, I can usually blink and it will go away but I keep blinking and it's not going away. His next appointment will be May 23rd. I'm anxious to see how they are. They get a little worse with each visit. We are going every 6 months now. The doctor hopes to put off surgery until he is 16, which is a year away.

Sometimes these things make me question whether or not it is really good for Bradley to be on steroids. Cataracts, Avascular necrosis, Osteoporosis, Diabetes, Weight gain, Growth failure; all of these things have been the cost of long term steroid therapy.

But I can't help thinking that the steroids could be keeping him walking. I know it is also a miracle that Bradley is still walking, but I believe God gives us medical staff and treatments to fight diseases. Making decisions can be difficult; we don't want to do anything that may cause him to stop walking.


Posted by jonesfamily91 at 11:27 PM EDT
Updated: Monday, 9 July 2012 10:41 PM EDT
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Wednesday, 4 April 2012
Finally Getting Some Where

We took Bradley to the Pediatric Orthopaedist at St. John's Hospital in Springfield, Illinois on Monday, after the Neurologist at Cincinnati referred us for evaluation of Bradley's persistant right ankle pain and the bony abnormalties shown on X-ray. This group is also affilitated with Southern Illinois University-School of Pediatric Orthopaedics. The visit went well and we were very pleased with Dr. McGinty and her staff. She was very knowledgeable about Duchenne Muscular Dystrophy and really explained well what was going on in Bradley's ankle.

Dr. McGinty believes strongly that Bradley has Avascular Necrosis of both ankles, but the right is worse than the left, most probably because he has suffered trauma in the right ankle with the sprain 2 years ago. Avascular Necrosis means that bone death or breakdown is occurring as a result of lack of blood blood to the bones in the ankle. This is probably a result of long term steroid use. He has been on steroids for about 10 years for the treatment of his Duchenne Muscular Dystrophy.

In the ankle there is a talus bone. The top of this bone is called a talar dome because it is rounded or concave on top. His talar dome is almost flattened. The X-rays from Cincinnnati shows the tibia has shifted and is almost touching this flattened area of the talar dome. She did another X-ray of Bradley standing and bearing weight and it shows impingement is occurring when he walks. This means bone is rubbing on bone and this explains why he is having so much pain. The same process is occurring in the left ankle. He also has arthritis in his both ankles and feet.

We have 2 options, surgery or non-surgical treatment. She recommends trying the non-surgical intervention first which is to add more heel to his right shoe. This would relieve the bone on bone pressure that occurs when he walks. We purchased a pair of New Balance shoes and sent them to the Orthotist through the mail. She will also make Bradley's night splints ordered by Dr. Rybalsky from Cincinnati Children's Hospital.

Dr. Rybalsky wanted Bradley to have Serial casting to fix his heel cord Contractures if the ankle problem does not preclude him from it. Dr. McGinty did not recommend serial casting. It will actually be very painful and intolerable. We know this to be true since he hasn't been tolerating stretches very well in the right ankle. She told us to continue stretches but to use caution and not stretch beyond the point of pain.

 She also explained the surgical procedure, which would be very extensive and painful. Because he has Duchenne, he would need to be up walking the day after surgery to prevent loss of ambulation. There is a possible risk that he could lose ambulation or get weaker. She explained that the surgery would involve scoping out and smoothing the bones. This would add more space between the bones that are rubbing together. She would also need to cut the tendon in the back of his ankle and add a tendon taken from the side of his foot to lengthen the heel cord.

Hopefully, the higher heel in his shoe will help and we won't have to do surgery. On the way home, Bradley told us if he has to have surgery he will walk the day after surgery no matter how painful it is, because he is not going to give up on walking. What a fighter!!

We are going to go back on May 4th, to see Dr. McGinty again and also to pick up the shoes and night splints from the Orthotist.

The ankle issue has been a long drawn out issue. The first orthopedist we went to did not even look at the CD of the x-ray that I had sent to him. He said he has not received the CD even though I called the week before and was told it was there. He also told us there was nothing that could be done for bony abnormalties. The second orthopedist didn't want to see him because he was a complicated medical case. That appointment was canceled the day before he was scheduled. I guess the third was a charm, because Dr. McGinty was so knowledgeable about not only what was going on in the ankle, but also about Duchenne Muscular Dystrophy.

 


Posted by jonesfamily91 at 12:01 AM EDT
Updated: Monday, 9 July 2012 10:47 PM EDT
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Friday, 23 March 2012
Bradley Has A Sinus Infection & Bronchitis

This has been a busy day. I worked until noon, but left a lot of work for myself to do on Monday since we had so many clients to see in the WIC office.

I had to take Bradley to the doctor since he has been coughing all week. The last three days have been worse and I suspected bronchitis. He did have the beginnings of bronchitis and a sinus infection, so she put him on an antibiotic. It's difficult sometimes to know when to go to the doctor when it comes to infections. In most cases, doctors like to wait at least 10 days to see if the infection is viral or bacterial, since antibioitics can make viral germs stronger. But when it comes to DMD, there is a risk for pneumonia and it is a good idea to treat infections prophylactically.

I tend to get a little worried when infections get into Bradley's chest. The really good thing is that Bradley has not been on an antibiotic since May, 2011. That was when he had his last bout of bronchitis. I am hoping he feels better soon. We are also treating him with promethazine/codiene, mucinex, and cough drops; as well as a vaporizer at night and plenty of fluids.

Bradley will be 15 years old on Tuesday, March 27th. We are going to have Bible study that night, but our refreshements will include a birthday cake.

On March 31st, we will be celebrating his birthday with relatives but it is going to be simple. I am going to serve ice cream, birthday cake, drinks, and snacks.

On the morning of March 31st, we will be participating in a MDA Walk in Cape Girardeau, Missouri. I think they have a lot of neat things on the schedule. I am thankful for the donations that people have made. If you would still like to make a donation, you can go to our team page here:

http://www2.mda.org/site/TR/Walk/77-F2-696-CapeGirardeauDistrict?pg=team&fr_id=1452&team_id=5023

Also today, our appointment with the Orthopedist (Dr. McGenty) at SIU Pediatric Orthopaedics in Springfield, IL. was changed from April 6th to April 2nd. I'm glad to get in earlier but it would have been a work holiday for me on the 6th. I am anxious to have Bradley's Rt. ankle addressed. I am much more concerned about the ankle than I am about serial casting. If this doctor approves, she can do serial casting also.


Posted by jonesfamily91 at 12:01 AM EDT
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