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June 2008 Blog Posts (24)

Accessibility and foresight

I recently won a pair of tickets to a Red Sox game at a race and forgive me as I didn't know who they were playing until the night of the game. If it isn't running I'm afraid I am really not interested, but don't hold it against me! Still, I live in New England and have taken my daughter Rachel and older son Matthew to a game in the past, so this was a perfect opportunity to take my younger son Patrick. The plan was to drive to the northernmost "T" Station (Boston's subway) avoiding Boston's… Continue

Added by Brian Denger on June 27, 2008 at 10:15pm — 2 Comments

heartbreak

So this is heart break! Well,
It's not as I expected;
No sudden burnished hell,
No heavens bisected;

No devestating rush,
No flood of molten metals;
But the relentless hush
Of falling petals.

Discovery
-Carolyn Wilson Link

Added by alicia on June 27, 2008 at 2:49pm — 1 Comment

Adventures in Serial Casting . . . Week Three

We are down to one cast. Yea! After much discussion the therapist decided that as long as Jon wears his AFO and promised to stand up for a few minutes several times a day she would only cast the right foot. He is trying, I think he is starting to understand the benefits. She really laid out his options and his other therapist said she would not hesitate to send him back for casting again if he started to tighten up again. The mention of surgery really got his attention. We go back next… Continue

Added by Susan Rathfelder on June 27, 2008 at 2:47pm — 1 Comment

The George!

Anyone one of you that uses a urinal will understand this. The last thing you want to do is ask your son do you have to go pee or worse, do you need to use the urinal. I was completely thrilled when Luke came home and said "it's George time", I said "what??" He repeated "its time to use the George, you know mom, when people say they need to use the John, my aide at school come up with calling the urinal (George) so nobody knows that I have go." I thought how clever and very funny. Now… Continue

Added by Misty VanderWeele on June 27, 2008 at 1:47pm — 3 Comments

Story Time

School has been out for a few weeks now and Nick is enjoying spending time at home with dad. We haven’t been out much but there has been enough entertainment at home. The weather has been really hot and now this past week we have had a lot of smoke from all the wild fires. The air quality is bad and we are keeping Nick safely indoors. He has had two coughing incidents during the past week that have required a lot of suctioning but thankfully no desaturation. Not sure if the bad air has caused… Continue

Added by Debbie Fish on June 25, 2008 at 11:33am — No Comments


Staff
Baby Steps

Here's what the week looked like for me. On Monday I attended the Muscular Dystrophy Coordinating Committee meeting. As a reminder, this committee (MDCC) was created because of the MD CARE Act. The MDCC was charged with writing a comprehensive research plan for the muscular dystrophies. http://tinyurl.com/53g7sy

Presentations centered around investments in research, translation, clinical trials and burden of care. Understanding Burden, or the financial/emotional cost is essential in order… Continue

Added by Pat Furlong on June 25, 2008 at 10:41am — 10 Comments

alternative treatments for Dmd

Hi, I'm wondering if anyone has tried any alternative treatments for MD. Because I am considering trying Royal Jelly Pills. I found this:



Royal Jelly is a powerfull antioxidant and therefore protects cells against damage caused by free radicals. Researchers found that antioxidant supplements slow down the muscular deterioration for people with muscular dystrophy.



Many more research should be conducted, there are no real evidence, but some testimonials. Royal Jelly DOES NOT… Continue

Added by Raymond Esquivel on June 22, 2008 at 5:07pm — 4 Comments

I’m Sorry…. I Won’t Apologize.

Maybe it’s my southern roots or maybe it’s my line of work, but having an apologetic tone seems to be my norm. It is my nature to not want to hurt or offend and being raised in a community where not waving to a neighbor (I mean EVERY neighbor) in passing seems to cause offense doesn’t help my disposition. I am sorry when I bump someone in passing, or when I hurt a loved one’s feelings, or for any other reason I think I have done some injustice to another living being. In these events, I… Continue

Added by Rhiannon Traigle on June 22, 2008 at 2:40am — 9 Comments

2:00 AM

Matthew was diagnosed ten years ago with Duchenne and Patrick about another eighteen months later. Today it is like looking back into a 1950's TV show for my family and me. My wife and I sometimes speak about how much simpler things were "back then". In some ways there is truth to the saying that ignorance is bliss. Sure, Matthew had "refused" to climb stairs alternating feet and wouldn't pedal a tricycle, but he was also content to play standing in front of the couch with his toys on the… Continue

Added by Brian Denger on June 20, 2008 at 6:18pm — 6 Comments

Adventures in Serial Casting . . . Week Two

So far so good!



The Physical Therapist took his casts off yesterday and was very pleased with the results so far. His left foot is almost at neutral and hopefully this will be the last casting of that foot. His right leg did show improvement also and she thinks it will only take two more rounds of casting. Yea! This has been so much easier that we imagined. She was encouraged to hear that he was able to get up and walk around the house, that means he won't lose any walking capability… Continue

Added by Susan Rathfelder on June 20, 2008 at 6:06pm — 1 Comment

Today: Praying for Strength,

Today I am patiently waiting for my sons blood tests results. Since Feb. he has had a very high heart rate 115-142bpm, has lost about 15 or more pounds and at this moment we don't know why. I am trying not to worry about the unknown. Because worrying is like rocking in a rocking chair, you are going back and forth without going anywhere! I keep telling myself, Misty his heart function is fine, his oxygen levels are great, he has done very well up to this point so STOP!

I found this quote… Continue

Added by Misty VanderWeele on June 20, 2008 at 2:00pm — 1 Comment

Pool Nightmare!

I have to share this story.

We wanted to get a pool this year for Marco since he likes to swim. So we decided to get one of those metal pole pools that the liner hangs off of. We ended up buying an 18 foot round pool from Toys-R-Us. I had to level the ground in the back yard so I started to dig, and dig and dig. Called my father and we then continued to dig again. Finally I made a phone call to my neighbor who has a very large Blue Holland front loader. He was at work so he called his… Continue

Added by MarcosDad on June 19, 2008 at 4:00pm — 9 Comments


Staff
National Institute of Heart Lung and Blood (HLBI) meeting last week

Last week I attended the NHLBI meeting in Washington DC. This meeting involves HLBI public representatives and provides an overview of NHLBI's overall interest.

Hightlights:

1. Presentation by Center for Alternative Medicine (CAM). This is complementary and alternative medicine. They spend 121M/year and support approximately 300 projects. They evaluate modalities that are held out to the public as hopeful but actually may not be worthwhile. Recent findings include a) Tai Chi - reduces… Continue

Added by Pat Furlong on June 18, 2008 at 11:12am — No Comments


Staff
CDC

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 — No Comments

An amazing video of faith, true love, and strength - it gave me strength - I needed it

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 — 1 Comment

Back from Disney

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 — 3 Comments

Bitter Apple

Bitter Apple



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 — 2 Comments

Adventures in Serial Casting . . . Week One

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 — 1 Comment

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…
Continue

Added by Lisa Jones on June 14, 2008 at 1:30pm — No Comments

MDA Camp Visit today

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 — 1 Comment

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