I had the pleasure of meeting Jennifer Wallace at a Parent Project Muscular Dystrophy Connect Conference last year.

She is a physical therapist and owner of the Duchenne Therapy Network.

In June of 2014, Cure Duchenne announced that they would be partnering up with her and traveling around the country to provide training to other physical therapists and parents.

Jennifer will be coming out to speak with Jackson’s physical therapists in the next month, and we are SO excited to learn from her!

She has a YouTube Channel where she shares videos every few months and I wanted to post some of those here today.

They are so beneficial and I always learn so much from each one.

The first one is THE BASICS of STRETCHING in DUCHENNE MUSCULAR DYSTROPHY.

Video 1

She covers about 6 or 7 of the most important stretches to keep our boys’ muscles flexible and able to keep them walking.

Here is a PDF that you can print out with all the stretches on it:

Daily-Stretches-rev-20141

VIDEO 2

This video focuses on Ankle Mobility.

Jennifer shows AFO’s (Ankle Foot Orthotics), which are what Jackson wears at night.

He recently outgrew his first pair, so he has moved on to another type of AFO Night Splint.

She also discusses serial casting.

Video 3

This video talks all about the importance of swimming.

Here is a printable sheet that goes over the best pool activities for our Duchenne boys’.

Pool-activities-rev-2014

Video 4

and the last video deals with Mobility Scooters.

When one is needed and how easy they are to fold down into the back of a small suv.

That is the first series of video, stay tuned and I will share the next 4 videos.

This is Carson McIntyre.

He is an almost 13 year old boy with Duchenne.

I had the pleasure of meeting his mom Kori at the last PPMD conference.

She is phenomenal, a complete powerhouse warrior DMD mom, and last year she wrote this and I have wanting to share it.

Also, Carson is having an upcoming birthday and is requesting birthday cards! Check out the bottom of the post for his address.

Happy Birthday Carson!

Just getting home from a long day at Shriners.

For the most part Carson is doing well, his spine is straight, he has amazing strength, however, we had to set up an appointment to get fitted for both a manual chair and an electric chair.

The stages of this damn disease is taking its toll on my precious boy.

To see the fear in his face and the river of tears coming from his eyes is heart breaking.

He doesn’t want a wheelchair he says.

For now we will continue with a manual chair that is fit to him.

He really needs it to help with his posture while sitting.

The muscles in his back are weak and because of that he has a lot of pressure on his lungs.

This explains why he has a hard time breathing.

Dr. Kerr said that we show our strength through tears and she is amazed at our strength together as a family.

We all cried!

Carson is doing very for his age, but there is a noticeable decline in his ability. He won’t give up!

He is the most amazing human being I have ever met!

Trying to explain to a 12 year old that these wheelchair’s will give him great independence is very difficult.

I just want him to be comfortable at all times. As a mother it is harder than hell to watch your baby struggle especially with the little things we all take for granted.

Please keep praying for my angel! Thank you for all your love and support.

We don’t know what we would do if you all weren’t a part of this battle. Together we can cure DMD!

We will give Carson a chance to live a long life.

He deserves nothing less.

Carson is having a birthday and Kori has requested for anyone to send him cards!

It would really brighten his day!

He explained, “in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.”

The person was silent for a moment
and then asked the silversmith,
“How do you know when the silver is fully refined?”

He smiled at her and answered,“Oh, that’s easy — when I see my image in it.”

What a simple yet profound story, right?

I’ve felt that lately God is holding me in that hot spot, right in the heat of the flame.

But I am holding tight to the fact that he has his eye on me, that he is there for me and will not let it destroy me.

It is all part of his plan to make me more into who I should be, more Christlike.

I know that sometimes he puts us in OVERWHELMING circumstances.
Because that is why we’re here.

We’re here to be tested,

to show who we really are,

what we will do,

if we will stand or if we will fall.