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Jones Family Blog
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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