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.

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.

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.

 

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.

We Finally Have A Referral for the Pediatric Orthopedist.
Well it turns out that we will be taking Bradley to Springfield for the pediatric orthopedic consult afterall. I just spoke to the Nurse there in Springfield and she has received the referral from Cincinnati Children's Hospital.So if the orthopedist feels that he can have serial casting, with what is going on with the right ankle (bony abnormalities and pain), we will just get it done there. This way we wouldn't have to worry about getting it arranged in Sikeston. I have a feeling they are going to say he shouldn't have serial casting because he is having such an issue with the ankle. Then again, serial casting could improve the situation. Tom will also be able to go with me, so I am thankful for that.