It is hard to believe that Thanksgiving and Christmas are just around the corner! We are still waiting for Paul's wheelchair order to be processed. This is our first experience working with a wheelchair vendor and we have learned that it is a very slow process. To think we began this during the summer! We can be thankful that Paul has a wheelchair to borrow at school in the meantime. Also, this gives us time to install an exterior lift on our minivan. Paul just returned from a visit at the certified Duchenne care center at the Children's Hospital Colorado last week. The doctors were pleased with how Paul is doing. Though he is slower now, he is maintaining function. He has done an amazing job wearing his leg braces every night and allowing us to stretch his legs and back each day. This has also helped him to maintain range of motion. We are proud of Paul! His pulmonary function is still good and he won't need to visit the cardiologist until next year. We will continue the steroid treatment because it is helping. Unfortunately the steroid we were importing has now been bought by a company in the U.S. and they increased the price by 3000%. We are waiting to hear if our insurance will cover it. The pharmaceutical company will have some sort of special program for patients to access the medicine if the insurance provider will not help to cover the cost. We hope to know soon what to expect.
Sep 02, 2017
Our hearts and prayers go out for all those impacted by Hurricane Harvey. We know many of our supporters are from the Houston area and nearby coastal plain. You, who have been so generous to us in our time of need, now face your own time of need. We will do what we can to support relief efforts and will also keep in touch with Joyce to inquire about the well-being of those from the affected area.
Jul 27, 2017
We just want to express today how thankful we are for everyone's support. Paul is excited about the possibility of having a power wheelchair. It opens doors for him and allows him to get out more...
Jun 19, 2017
Paul recently returned from his follow up appointment at the Dallas clinic. After much discussion with the doctor and the physical therapist, we agreed to move forward on purchasing a power...
Mar 30, 2017
Spring is here and we are taking one day at a time with Paul. The steroids have really helped him maintain his abilities, for which we are thankful. He had a couple bouts with illness in the last...
Feb 23, 2017
Thank you for checking in! We recently returned from a visit to Dallas. Their clinical trials and their connection to a Wellstone Muscular Dystrophy Cooperative Research Center made us want to...
Dec 13, 2016
Thank you all for your continued and generous support! For now we are just following our routine of daily medications and weekly physical therapy appointments as well as other occasional...
Sep 14, 2016
Excellent informational video about DMD: https://vimeo.com/133337162 Did you know Duchenne Awareness Day is on September 7th every year?
Jun 27, 2016
We are back from a visit to the certified Duchenne care center at the Children's Hospital Colorado. The doctors were pleased by how well Paul has responded to the steroid treatment. The steroids...
May 31, 2016
https://blog.helphopelive.o... This is a link to the HHL blog post about Paul. Also, Paul's on the HHL homepage header! Watch for his picture to cycle through.
May 11, 2016
Summer is almost here! This summer Paul will have another visit to the certified DMD care center at the Children's Hospital Colorado. He will continue his usual therapies (physical therapy,...
Mar 22, 2016
Thank you to everyone for your kind words and for your generosity. We are truly grateful for you all!