One more thing for today. You already know we develop educational materials, but it is important to know how we do this and what resources we utilize. For the last several years, we have are the recipient of a cooperative agreement with the Center for Disease Control (CDC). Our relationship with CDC has been very (very) productive, raising awareness, outreach to underserved and under represented populations, developing materials, the patient self-report registry and very soon, materials to… Continue
Added by Pat Furlong on June 18, 2008 at 11:10am —
I wanted to share this video. Read all the intro and then watch the video if you would like it. It is on Godtube.com. I am not sure what the child has as far as his disability, but strength, love and faith is what he and his father have. Of course, it made me cry, and I can't imagine you won't. It is an amazing video and is extremely powerful!!! You may need to copy and paste the link of the video. Michelle
The son asked his father, 'Dad, will you take part in a marathon… Continue
Added by Kelvinsmom - Michelle on June 17, 2008 at 7:31pm —
We got back Saturday from our Make-a-Wish trip to Disney World. We had a blast. Now we're exhausted and recuperating. LOL!!
We left our house Sunday, June 7th at 7:30am (central). We were picked up and taken to the airport, which is about an hour away. Our flight left at 10:30. We arrived in Orlando just before 2pm (eastern). There was a greeter from Give Kids the World Village (GKTW) there at the security exit to help us get our bags and then to our rental van. We were soon on our… Continue
Added by Laurie Paschal on June 17, 2008 at 11:36am —
I have set up a Caringbridge site and use it regularly to update family on what is happening in our house. Now with this new site up and running I will make sure to post all my journal entries here also.
Anyone who has raised a puppy probably knows about a product called bitter apple. It is a spray you can put on whatever you don’t want your pup to chew on. When we got Steffi we were using a spray bottle of water to discourage her from chewing on Angel… Continue
Added by Debbie Fish on June 16, 2008 at 12:35pm —
I don’t know if we made the right decision or not but it is the one we have made. I am not sure if Jon really had a say in the decision, but he is going along with it. Of course there was a bribe and what 17 year old boy would say no to new video games. A small price to pay for what we hope will help him walk longer, and with less risk than heel cord release surgery. We also reminded our dear son that if he had done his stretching and wore his night splints we wouldn’t have to do this.… Continue
Added by Susan Rathfelder on June 15, 2008 at 5:39pm —
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… Continue
Added by Lisa Jones on June 14, 2008 at 1:30pm —
Even though Kelvin is only 5, he'll be 6 in Sept., he and his sister and grandma and grandpa got to spend the day at the MDA camp. My brother is a respiratory therapist and volunteered there for 3 days, so they got to go to family day. My parents couldn't believe what an amazing job they did. Kelvin can't wait to go and stay next year. Of course, I'm not ready for that (for him to stay somewhere without me), but he had so much fun, he wants to live there. Of course, I remain positive, that… Continue
Added by Kelvinsmom - Michelle on June 11, 2008 at 10:07pm —
This week we put in a 15 foot pool (we'll go bigger later, but this will help Kelvin for now). We then bought a hot tub and tub enclosure today, so that we can all be in the hot tub any time of the year, even when it is super cold. Of course, we bought this to help Kelvin, on advice of Dr. Wong, she says the pool and hot tub are great, so that is what we did. I can't wait to be in the hot tub, but we won't get it going until fall. We are just doing what we can to help him, whatever it takes.
Added by Kelvinsmom - Michelle on June 8, 2008 at 6:13pm —
Just 11 hours left until the car comes to pick us up for Sam's Make-a-Wish Disney World trip. To say he, and the other two, are excited would be quite the understatement. I'm just hoping they all get a little sleep tonight. I'm still trying to make sure I have everything packed. I've got my checklist. I seem to be doing well, but I can't ever shake that feeling that I'm forgetting something. Ah well, guess there's always a Wal-Mart around the corner for just that reason, right?
Added by Laurie Paschal on June 7, 2008 at 9:00pm —
The loss of a child for any reason is unacceptable, heartbreaking, and tragic. I try on the idea of ‘there is always a silver lining’ but find the phrase just doesn’t fit in many cases. I do think, through our tears, we can learn something…so forgive me for ranting.
As parents, we need to be vigilant. We need to ask questions and expect answers. We need to be better informed about steroids and more knowledgeable about risk. We need to understand:
1. That complaints of… Continue
Added by Pat Furlong on June 5, 2008 at 3:13pm —
Matthew is finishing his freshman year and he, Alice and I recently attended his annual IEP meeting. These meetings often lead to concerns about high blood pressure and lost sleep for parents. Working with educators and professionals in their domain and attempting to speak in their language is challenging. Fortunately my wife and I have established a good rapport with our sons' Teams and have been successful obtaining the services and accommodations both our sons need. Every year Alice and I… Continue
Added by Brian Denger on June 4, 2008 at 10:01pm —
Steroids are now 'gold standard' in Duchenne. While many physicians recommend daily regimens, there are still others who suggest alternate regimens. Data from the recent CINRG trial comparing weekend dosing to daily dosing suggest nearly equal benefit. But to be fair, the trial is not following the boys long-term to understand if the age of loss of ambulation varies from daily to weekend dosing.
And while steroids do offer considerable benefit, there is also considerable risk. Sadly,… Continue
Added by Pat Furlong on May 22, 2008 at 3:00pm —
When I was growing up, we had a lovely babysitter who started every meal with a prayer she learned as a child, but changed or added to because she looked at things in a different way. “The Lord is my shepherd, I shall not want… but I do,” she would say. She would look at all of us with a funny grin and talk about her laundry list of needs. There was a great deal she wanted. It still makes me smile to remember Ellen and her very honest approach. I can I still hear her words and see that silly… Continue
Added by Pat Furlong on May 21, 2008 at 2:29pm —
As the public member of the Paul D. Wellstone Muscular Dystrophy Cooperative Research Center Steering Committee I attended the annual "face to face" meeting recently hosted by the University of Rochester Center in Rochester, NY. A little background might be helpful as many in the Duchenne community may not realize that as mandated by the MD CARE Act of 2001 these Centers are focused on research for the nine known Muscular Dystrophies including Duchenne, Becker, Limb Girdle MD,… Continue
Added by Brian Denger on May 16, 2008 at 9:12pm —
When my wife and I learned my sons had Duchenne Muscular Dystrophy it was like someone threw a wrench into our world. The questions came faster than the answers. For example, how are we supposed to go to work, breath or resist the urge to pull our sons out of school and just hold them? Well, as many of you know there are no answers others can provide. All truths must come from within based on who we are.
So, how do families learn to cope with a diagnosis like DMD and avoid going over… Continue
Added by Brian Denger on May 10, 2008 at 9:43pm —
What messages do we send to our sons, to our friends, to our family? When Duchenne muscular dystrophy (Duchenne) enters our homes, all of us change. What we think changes. How we communicate changes. And maybe, just maybe, our communication changes in light of the hope we have on any given day.
Sometimes I hear themes that frankly worry me a bit and since this is my blog, I thought I would bring them up simply to think about. Nothing more.
I do know we are all waiting…… Continue
Added by PPMD on May 1, 2008 at 9:30am —
Most people who know me also know I run a little. O.K., maybe a lot. Last year I ran over 2400 miles. When I travel the first thing I usually do prior to leaving is map out a few places to run and speak with people in the area about the best places. In 2007 I ran in twelve states and in Canada. It must make me seem a bit compulsive, but that's me. What started as seeking a bit of exercise has morphed into a fund raising tool and an opportunity to reflect.
My typical run lasts about… Continue
Added by Brian Denger on May 1, 2008 at 9:13am —
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… Continue
Added by Lisa Jones on December 24, 2007 at 2:00pm —
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… Continue
Added by Lisa Jones on August 12, 2007 at 3:30pm —
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…
Added by Lisa Jones on June 12, 2007 at 3:30pm —