Westley has been diagnosed with Duchenne Muscular Dystrophy.

Archive for April, 2014

The Good, The Bad and The Better

The Good…
The Muscle Walk which was cancelled due to inclement weather is now rescheduled for May 4th at the University of Richmond Weinstein Gym! Event is from 1-4  at 28 West Hampton Way, UofR, VA 23173. Donations are still welcome – http://www2.mda.org/site/TR/Walk/22-379-RichmondDistrict?pg=team&fr_id=8003&team_id=22103
Both boys made A/B Honor!
Westley will be meeting with Make a Wish to have a wish granted. He doesn’t want me to spill the beans just yet because he knows it’s a lofty request. I truly think it could actually happen though. His backup plan is a trip to Disney. Either way it’s such a blessing!
We are putting together an Inclusive Racing team; Westley will be completing his first half marathon exactly a year after I did my first one. He is WAY ahead of me on this running thing.
The Bad…
I hate to say it out load (because that makes it more real) but Westley is declining faster than we have ever seen him. Just walking the 20 feet to the bathroom is a chore. He is having a hard time standing from the couch or even to brush his teeth and hair before school. Westley has been suffering from a constant headache for the last two months; he even spent a day in the ER because it had become unbearable. We saw every doctor we could think of, got a CT scan (all clear!) and finally ended with a few sleep studies. Westley has been using a Cpap machine for a few weeks now and we end this bad report with a bit of good; he has been headache free for a week now!!!!
The Better…
We will taking Westley to Cincinnati, OH in either May or June to have him evaluated and cared for by one of the best Muscular Dystrophy clinics in the country. We hear amazing things from the DMD world about these doctors. No, there is no cure they can offer him but if they can make the quality of his life better than it will be well worth the trip. The appointments are 3 straight days so please pray our little guy holds up for all the poking and prodding that will come his way. (I plan to bribe with ice cream.)
Along with Westley’s health Dallas and I constantly worry about how we are going to properly care for him. A vehicle and a home that is not a prison is a continuous stressor. We are excited to have just met with the man who originally build our home in 2000 to start plans for an addition. This wing will be Westley’s “apartment” so to speak; housing a fully accessible room and bathroom. We hope to break ground in June. We are cutting costs by doing some of the inside finishing work ourselves but we are overjoyed that Westley will have a place to call his own with no limitations.
God Speed,
Jessica and Dallas