Just when we thought we were done with the whole casting process the Dr. wants more. Even though Jon’s heels touch the floor now his foot still drops when he lifts it. So back we go for more casting. At first he refused, but a new video game is a big carrot to dangle in front of a 17 year old boy. So he ultimately agreed. Then I get home and see that the authorization expires today, now I have to get that extended. I also still have appoints with the Cardiologist, the Pulmonologist and an OT… Continue
Added by Susan Rathfelder on July 9, 2008 at 12:54pm —
Heather and I are basically your average mom's, who decide to enter all different kinds of athletic events, as motivation to keep us working out. :) There is nothing like signing your name on the dotted line to keep you honest in the gym! So two years ago, we learned to swim (now neither one of us would have drowned if you threw us in the water, but we were a long way away from lap swimming) to compete in our first sprint triathlon.... to two… Continue
Added by Jenny on July 9, 2008 at 12:30am —
When I think of families caring for a child with a chronic condition I sometimes think of nineteenth century American writer and poet Henry David Thoreau. He wrote "The mass of men lead lives of quiet desperation." I don't entirely agree with Thoreau, yet realize there are moments in our lives where we struggle for control and insight.
It is a daunting task to live and breathe Duchenne each and every day and those of us connected to this disorder cannot escape it's grasp. Unlike… Continue
Added by Brian Denger on July 6, 2008 at 7:45pm —
.....as it ends up, two people bid $200 dollars on Stephanie's scrapbook auction for Micah. So Stephanie decides to make two books, and then another of Stephanie's fan/readers donated $100 of her own money to the pot for a grand total of $500. Again this is someone who does not know ANY of us. What a AWESOME reminder that God is taking care of Micah!
Added by Jenny on July 5, 2008 at 1:00pm —
Jonathan is my hero! Not much stops him, even though he has Duchenne Muscular Dystrophy. He is a good student and has earned enough merit badges in boy scouts to become an Eagle Scout. He is working on his community service project which is the last requirement to obtain the eagle scout rank. He is a member of the order of arrow fraternity in boy scouts. He has a great personality and laughs all the time. He is my inspiration every day. Jonathan told me "Mom, so what, I have Duchenne MD. No big… Continue
Added by Christine Piacentino on July 4, 2008 at 4:32am —
, creating HOPE, raising AWARENESS, fundraising for a MIRACLE for DMD is the local Run for Our Son's team that I co-lead with my good friend Heather in Gig Harbor, Washington. Our team goal is to raise $50,000 for PPMD by November. Each fundraising event has brought our team new blessings, starting with our search to find a local 5K route that lead us to find another local family whose son has DMD, who didn't know about PPMD, what an… Continue
Added by Jenny on July 3, 2008 at 10:30pm —
I just sent this letter to all my Alaska government officials to get them to sign the Care Act today. I feel totally uplifted!! Thanks to PPMD's incredible website. They have made this process incredibly easy. Go to their www.endduchenne.org website and check it out. Look under tab, Speak Up.
My name is Misty VanderWeele a born and raised Alaskan. I live and work here on the family farm in Palmer. My 16 year old son Luke,… Continue
Added by Misty VanderWeele on July 3, 2008 at 1:17pm —
Jon is cast free, at least for now. The therapist wanted to recast his right foot to see if she could get a little more stretch out of it, but because he has a pretty decent case of heat rash she decided not to. She did make him promise to wear his AFOs as much as possible so he can keep the range we got. He can get both feet to neutral, pretty good considering we started with a 20 degree foot drop. So now we have to encourage him to stretch and wear his AFOs so we don't go back to where we… Continue
Added by Susan Rathfelder on July 2, 2008 at 9:00pm —
Lucas went to Summerfest down at Milwaukee's lakefront to see Sick Puppies. While hanging out we also saw a band from Chicago - American Taxi.
After the Sick Puppies performed, Lucas, I and his brother were able to "meet" the band and get their autographs. Not many signed bands take the time with their fans like that so it was really cool.
Added by Servais Family on July 2, 2008 at 2:39pm —
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 —
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.
-Carolyn Wilson Link
Added by alicia on June 27, 2008 at 2:49pm —
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 —
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 —
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 —
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 —
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 —
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 —
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 —
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 —
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 —