July 2011 Blog Posts (9)

the tooth brush

the tooth brush

Glancing at the clock on the wall I noticed it was already a little past 11:30pm. Where did the time go, I thought to myself. I still had a sink full of dirty dishes to wash. The boys had not been given their evening dose of meds yet and laundry laid piled in a heap at one end of the sofa. I knew the dishes and laundry could wait but Cody and Josiah really needed to be off to bed now and getting them to bed… Continue

Added by Rita Felling on July 31, 2011 at 4:00am — No Comments

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.…


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

Finding my Gayle

I attended the PPMD Annual Connect Conference earlier this month.  Each year I always try to come away with something concrete  This year I found the session entitled Herself First very helpful and informative. It was of course geared toward Mom's caring for Duchenne guys.  However, I think women in general need to be able to concentrate on themselves.  Women in general are usally taking care of everyone one their families and neglect themselves.  One of the points from this…


Added by Christine Piacentino on July 23, 2011 at 10:00pm — No Comments

Off the List

Off The List

Off the list

No more parties for you

Unfriended, blocked, unwelcome

A subtle rejection

Quiet and sneaky, perhaps

Why declare it with words?

Better to play it safe

Fly under the radar

It's not like you were UN-INVITED

The possibility of inclusion never even existed

There were no… Continue

Added by Andrea Cleary on July 17, 2011 at 11:00am — 2 Comments

On the Eve of Simon's 11th Birthday


Precious Quick-sand


Shins dotted purple and blue

With bruises of variable hue

Gastrucnemius swollen tight

AnkleFootOrthotics strapped on every night

Tummy out, shoulders thrown back

Waddling  like a penguin white and black

Balance is off, appetite is not

Damned Deflazacort  and that cake Grandma brought

Joyous green eyes, messy golden hair

Oh this is so not…


Added by Andrea Cleary on July 15, 2011 at 12:00am — 2 Comments

Co-Blog with Ivy Scherbarth On Mothering

Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started where we will both write on similar topics from two different perspectives, but living in the same world of Duchenne.


By, Ivy Scherbarth

On Mother's Day this year a miracle occurred at my… Continue

Added by Pat Furlong on July 14, 2011 at 1:00pm — 3 Comments

Path to Mars: Possible with Duchenne cure

This is just a speculative thought which I have compiled after going through my daily life on Google Search engine

First about the trip to Mars. In today's world its estimated that a human trip to Mars will be about 3 years. It will take about 8 to 9 months to go to Mars, spending about a year on Mars and then again about 9 months back.

So how does it connect with Duchenne.

We know from the time astronauts have spent in space that, in a micro gravity…


Added by Tulika on July 6, 2011 at 5:11pm — 4 Comments

the night call

the night call

I arose from a deep sleep upon hearing my little Josiah softly ask me to come check his heart. I quickly pressed the return call button on the monitor to let him know I was on my way. Without hesitation I was up rushing to his room. Josiah immediately whispered he…

Added by Rita Felling on July 3, 2011 at 12:42am — No Comments

Parents of DMD boys near 15 years of age to discuss issues in our lives

I would love to discuss issues we are facing with our Duchenne boys- especially if your son is near 15 years old.  Thanks, Debi

Added by Debi McCrea on July 1, 2011 at 10:09am — 9 Comments

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