Thursday, April 23, 2015

Spring Days

Spring is finally here and it is glorious.  Ball games and green grass and pollen...that last one isn't so glorious ;-)

We have the Jog for Josiah today. Already over $7,000 has been donated for Parent Project Muscular Dystrophy thanks to our wonderful friends, family, colleagues, etc. Everyone has been so generous! The weather is perfect, and we look forward to today's event!

We have been working on adjusting to the night orthotics. One foot seems to bother him more than the other one, but we have a plan to try and locate the issue and correct it as best we can. :) 

Josiah has started Aqua therapy once a week, and he really enjoys it.  He doesn't love the stretching, but he loves being in the water. His therapist is so sweet and works with him amazingly well. 

Part of my reason for blogging, and blogging with a fair amount of detail, is to remember - so that I don't forget all the "little" things along the way. Already some of the timeline from last fall isn't as clear in my memory, but I know I have it written down, and God is faithful. He continues to meet us at each step along the way. 

Monday, April 20, 2015


Last week Josiah and I went to Duke to pick up his orthotics. He will wear these at night. The purpose is to keep the heel cord stretched and hopefully, help Josiah be mobile a while longer. Our PT at Duke is so sweet. She went over how to put the braces on, and then we talked about wheelchairs. When we walk for longer distances, Josiah needs a stroller, but he has outgrown most of your standard strollers. The options from there are a push chair (special needs stroller) or a wheelchair. The PT's opinion was that overall, a lightweight, manual wheelchair would be the best option for Josiah at this point. Sometimes he asks to take his stroller to school, and more recently he asked about getting a rolling walker to use at school so that people wouldn't bump into him. More about wheelchairs in another post.

So Wednesday night we put on the braces, and Josiah went to sleep no problem. At midnight he woke up sobbing, saying they hurt. I took them off, and he went right back to sleep. Apparently that was the straw that broke the proverbial camel's back. I cried longer and harder than I have cried since that week back in August . It was a reminder of the difficulty he, and by proxy, the rest of us will be going through. A reminder that "normal" has gone by the wayside. That my sweet boy will have to endure through this trial. That we can do nothing to change that.

Saturday, April 18, 2015


Our family had a great time on our spring break trip to NYC with a stop in DC on the way back. Josiah had been talking about seeing the Statue of Liberty, so off we went. We went with our friends, the Wilsons, and had an amazing time!

My FitBit says we walked a total of 35 miles while we were away. The kids were troopers! We took a stroller for Josiah and looked for as many elevators and escalators as we could. The rest of the time we had a system down where I carried Josiah on my back and Bennett (with help from Bert or Chandler) brought the stroller up and down the stairs. We went hard every day, stayed out late, and loved every minute. We hit pretty much everything on our list: Statue of Liberty, FAO Schwartz, Toys R Us, Time Square, Midtown Comics, Meatball Shop, Doughnut Plant, Shake Shack, NY Pizza,  Central Park, Billy Johnson Playground, Lego Store, St Patricks Cathedral, M&M Store, Grand Central Station, Museum of Natural History, Chinatown, 9/11 area, St Pauls Cathedral, and a Yankees game.


Monday, April 13, 2015

Jog For Josiah

As many of you know, our son, Josiah, was recently diagnosed with Duchenne Muscular Dystrophy. This diagnosis has brought with it all of the emotions you would imagine, and we are continually grateful for all of the love and support we receive from all of you. 

Duchenne is the most common fatal genetic disorder among children. To date, there is no cure or treatment to stop the progression of Duchenne. Those with Duchenne are truly in a race against time as their muscles deteriorate further each day. It is almost impossible to imagine that in just a few years, Josiah will need a wheelchair to get around, and even more impossible to imagine the stages past that. Most of the time, I push away those thoughts because they are just too painful. Already we see the changes (weight gain) brough on by prednisone, the only medical option for Duchenne - it's only purpose to try and slow the progression. 

On Friday, April 24th, his school, The Piedmont School in High Point, NC, will be hosting a run in his honor as part of their field day.  Our family will be participating in the Jog for Josiah which will include running several laps around his school for approximately an hour. The students are raising support on a per lap basis, and if you wouild like to partner with us, any financial donation to help Parent Project MD lead the fight to end Duchenne would be appreciated. Click on the link below and on the site, you will see a "Donate" button.

If you prefer, you may also mail a check, made payable to Parent Project Muscular Dystrophy, to:
Parent Project Muscular Dystrophy
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601

(Please note that the check is in honor of Josiah Deese/Jog For Josiah)

All funds raised will benefit Parent Project Muscular Dystrophy and go directly toward researching a cure. Your contribution is 100% tax deductible.

Thank you for your support of Jog for Josiah to benefit Run For Our Sons and Parent Project Muscular Dystrophy. 

Bennett and Kara Deese and family