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January 2009 Blog Posts (14)

spinal fusion

Jeffery has scoliosis and they recomended the spinal fusion. Is there anyone out their who knows about this. I'm terrified is this a goood idea.

Added by Teresa on January 30, 2009 at 8:41pm — 2 Comments


Staff
Disney Marathon and Hope: This is what takes us dreamers to the other side of the shore.

It's nearly 3 weeks since the Disney marathon. Funny how time slips away. For me, Disney and all of the memories keep me going from year to year. I realize I am not a 'REAL" runner. No one would look at me and think 'athlete'. Never. "Hitting my stride" actually means the ability to walk and breathe at the same time! But there is something deep down inside that makes me smile whenever I silently say "I ran the 1/2". I turn the words over and over in my head, wondering what ever possessed me to… Continue

Added by Pat Furlong on January 27, 2009 at 2:03pm — 5 Comments

Starting own business

For a few years now I have been wanting to get Tyler a service or companion dog. There are 2 problems I came across. One I am allergic to dogs (besides your typical hypoallergenic). So I thought I'd look into a Standard Poodle. Well it is very hard to find a non-profit that train them. Some want you to purchase the poodle yourself then you would have to pay for the training. Well, that was getting into a lot of money the poodles themselves are between $1000-2000!! So I hit a wall and swept it… Continue

Added by Tracy on January 27, 2009 at 11:08am — 3 Comments

Here's a few things to share with others....you may already know some of this, all of this or none of this!!!!

We will all be seeing GREEN in our local communities......between Feb. 15 - Mar. 15 ( this is an annual event each

year that MDA does ) " Shamrocks Against Dystrophy " where individuals purchase shamrock mobiles for $1

green and $5 for a gold shamrock and the businesses display them about their location.

I purchased one from everywhere I see them, and I write on my shamrock: Cheryl Markey - In honor of my son Adam MacDonald

who has Duchenne Muscular Dystrophy, I love you!… Continue

Added by Cheryl Markey on January 21, 2009 at 11:00pm — 8 Comments

New to forum

I have spent the last few days looking at the forum and I am very impressed. I have been waiting for a site like this for years. I have spent years angry, frustrated, confused, irate, astounded, fabbergasted and infurated with all the doctors, health visitors, social workers, teachers, OTs, physios etc, with no-one to share it with apart from my husband (who just says 'now try to stay calm'!!!). Now watch out - I can vent all my frustration and anger into words on the forum and everyone will… Continue

Added by Lynne Taylor on January 21, 2009 at 6:49pm — 2 Comments

Depression

My son Tyler has Duchenne MD, and will soon be turning 12. He is usually a pretty happy kid considering, just seams lately he has been so depressed with the every day issues of dealing with his disease. He also has a learning disability with his Duchenne, so he's more on a 6 year old level rather than 12. He has been asking me more and more lately why he can't walk like his siblings, and it's not fair and will break down in tears. I am usually the strong one and will always let Tyler know that… Continue

Added by Holly Cahoon on January 21, 2009 at 2:08pm — 8 Comments

finding a cure and helping others

my name is kimmy watters and i have a friend who son has duchine and he is amazing little boy, andi am so proud of what he does everyday. i am just offering some support and please tell me how you cope everday. i am here to help you so pl post when you can, kimmy

Added by kimmy on January 19, 2009 at 6:44pm — 1 Comment


Staff
Steroids and Side Effects

Steroids – counteracting side effects.







Steroids are a problem. Of course, they are Standard of Care and deliver benefit. There is no question about that. But over time, the side effects will hit you (your son) and it may be time to consider seeing an Endocrinologist. One of the members of the Cincinnati Neuromuscular Team is a pediatric endocrinologist. They evaluate every boy carefully and thoroughly . If he meets certain criteria, Growth Hormone is recommended. I spoke… Continue

Added by Pat Furlong on January 17, 2009 at 4:20pm — 12 Comments

Caring Bridge Link

http://www.caringbridge.org/visit/brandonrice

Brandon's mom (Catriena Wheeler, also a member)) and I will be working on this together. Wish us luck and please leave lots of comments! Its our first attempt at trying to keep everyone near and far informed on Brandon.

Added by MommaToo on January 11, 2009 at 3:00pm — No Comments

Hits close to home.

I am having a terrible time sleeping. After reading about the TWO 13 year old boys with Duchenne's who passed away already this year, I am just heart broken! I cant imagine what the parents must be feeling. Although you know that your child is expected to have a limited life expectancy, you sure don't expect it to be 13! I guess it hit pretty hard because we have a soon to be 14 year old. Although he is doing well over all, little things seem to be happening and sneaking up on him.

Brandon… Continue

Added by MommaToo on January 10, 2009 at 7:30am — 2 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…

Continue

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

Guilt

2 years ago I was going through some ruff times. I was trying to do it all. I have 5 children all together 3 with DMD. There was a school nurse that asked me a question that I will never forget. For one did I know what birth control was and why did I decide to have children. She thought it was irresponsible to continue having children after I found that my first son had DMD. She wanted to know why I didnt abort the other children when I knew before I had them that they Could possible have DMD.… Continue

Added by Teresa on January 9, 2009 at 2:13pm — 6 Comments


Staff
Happy, Healthy and Prosperous? New Year

To be honest, I am happy the Holidays are over. Don't get me wrong, I love them, look forward to them, make big plans in my mind and absolutely love it when Jenny and Michelle are home. Then, it all feels right to some degree, although there is an absence that you can feel in every room of our home - Chris and Patrick. That emptiness will remain forever. During the holidays, it is as if the world stops and everyone is resting. It makes me antsy because I am very aware Duchenne takes no rest, it… Continue

Added by Pat Furlong on January 8, 2009 at 1:30pm — 4 Comments

My Research Project - End Duchenne Grant Program

When Kimberly approached me about sponsoring a Parent Project this year research was the obvious choice for me. I relish reading research papers like my wife Kristin does a Jane Austen novel. I suppose not everyone enjoys a riveting tale of genetics, molecular biology and pharmaceuticals. I cannot explain why I do. This is such an exciting time in DMD research and I want everyone to get excited. This is where the Cure will come from. Some day, somewhere some scientist will look up from their… Continue

Added by John Hiatt on January 5, 2009 at 10:33am — 1 Comment

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