Lisa Jones's Blog (11)

July 2011 Update on Bradley

We just returned Thursday night from our bi-annual trip to Cincinnati Children's Hospital for Bradley's medical appointments. Bradley's neurologist and physical therapist are pleased with Bradley's muscle strength. They are really amazed by it. They emphasized again the importance of Bradley's stretching exercises and wearing his AFO's every night.

The physical therapist would also like for Bradley to begin wearing his hand splints again because his fingers are getting tight again.…

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Added by Lisa Jones on July 23, 2011 at 10:00pm — 3 Comments

January 2011 Update

Bradley is doing very well with muscle strength for an almost 14 year-old with Duchenne Muscular Dystrophy. The doctors are still very pleased with his ability to walk. They were also happy to see that he had lost a significant amount of weight which has contributed to his being able to maintain muscle strength.



He was diagnosed 6 months ago with steroid induced diabetes. Because of this, Bradley was started on a medication for diabetes which also helps with weight loss. He has also… Continue

Added by Lisa Jones on January 7, 2011 at 2:00pm — 12 Comments

July 2010 Update

7-9-10

We recently learned that Bradley has steroid induced Diabetes Type II.  He had glucose tolerance testing at Cincinnati Children’s Hospital. His blood sugar was 206, 2 hours after the glucose drink. He started an oral medication, metformin which will help control his blood sugar, his appetite and his weight. We are checking his blood sugar once daily and his blood sugars have been normal at home.

 

Everything else went well at his Cincinnati visits. His heart MRI…

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Added by Lisa Jones on July 15, 2010 at 9:30am — No Comments

January 2010 (Ankle Sprain)

1-12-2010

Bradley sprained his ankle on Sunday.  He was sledding and jammed his right foot into a tree. We waited a couple of hours to see how things would go.  In the meantime, we applied ice and he layed on the couch. Tom had to carry him to the bathroom during that time because it hurt too much to bear weight.



I decided to take him to the ER at Memorial of Carbondale just to be sure it wasn't fractured. I thought it would probably be a…

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Added by Lisa Jones on January 14, 2010 at 10:00am — No Comments

December 2009 Update

Last week, we made our bi-annual trip to Cincinnati for Bradley's DMD appointments. Overall we got a good report.  They are amazed that he is maintaining strength and that he is still getting around so well. It did take him a little longer to get up from a sitting position on the floor; this does concern me some but he did his 30 feet slightly faster this time so that was a plus.



Getting up from sitting on the floor:

June 2008-4.8 seconds

January 2009-4.79… Continue

Added by Lisa Jones on December 17, 2009 at 10:00am — No Comments

June 2009 Update

6-11-2009

Bradley just completed his 6 month follow up appointments at Cincinnati Children's Hospital today. We saw Dr. Rybalsky instead of Dr. Wong in the Neuromuscular clinic.  There are so many DMD patients coming to Dr. Wong that she cannot see them all everytime. 



We spent most of today in Neurology. We talked about Bradley's heel cord contractures, and contractures in his fingers/wrists (digital flexors). We discussed doing serial casting again but the Physical…

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Added by Lisa Jones on June 11, 2009 at 10:00am — No Comments

January 2009 Update

Bradley’s Update (January, 2009)



We just returned from Bradley’s appointments at Cincinnati Children’s Hospital. It was a quick, exhausting trip but we are glad to have Bradley there. It is truly very different in comparison to the previous care Bradley has received. It’s not that he received bad care before; it’s just that he is getting the best care possible. I asked Tom what we should do in regards to alternating visits with St. Louis Children’s. He felt that if Cincinnati…

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Added by Lisa Jones on January 10, 2009 at 1:00am — 7 Comments

June, 2008: Fist visit @ Cincinnati Children's Hospital

We just returned from Cincinnati where we visited Cincinnati Children's Medical Center. I truely believe God led us to there for the best care possible for Bradley. It was amazing! The staff are so caring, friendly, knowledgeable and sincere. I now understand why families affected by Duchenne Muscular Dystrophy come from all over the country seeking medical care for their sons. I was surprised by how much time the staff spent with us; particularly Dr. Wong…
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Added by Lisa Jones on June 14, 2008 at 1:30pm — No Comments

December, 2007 Update (St. Louis Children's)

Bradley's St. Louis appt. this month went well. The student doctor commented that Bradley seemed more like a child with Becker Muscular Dystrophy than Duchenne Muscular Dystrophy. For those that don't know, Becker MD is a milder version of DMD. The neurologist said we should not ignore the fact that the muscle biopsy done when Bradley was 3 years old indicated DMD. There are varying degrees of both DMD and BMD. I am hoping Bradley is borderline between the two. I doubt we will be doing any…

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Added by Lisa Jones on December 24, 2007 at 2:00pm — No Comments

August 2007 St. Louis Cardiologist Visit

Bradley had a cardiology visit this week but I'm not sure what to do about starting lisinopril. The cardiologist does not advocate starting it before heart changes appear. He said he was disappointed in our neuromuscular doctors for giving credibility to one study showing lisinopril can help prevent cardiomyopathy. It may be he didn't like another doctor making recommendations in his field of expertise. He also is adament that it is very unusual for heart changes to appear in a child with…

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Added by Lisa Jones on August 12, 2007 at 3:30pm — No Comments

June, 2007 St. Louis Children's Hospital Update

Just wanted to update everyone on Bradley's St. Louis Children's MD visit today. He is doing well for being 10 years old. We talked about the chest pain he has been having. I told him the Family PA had ordered an echocardiogram and it was normal. I also told him it was concluded that he has stomach…
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Added by Lisa Jones on June 12, 2007 at 3:30pm — No Comments

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