Merry Christmas and a Happy new year! We are enjoying a break from the busyness of work and school days. David has time off from teaching, as does Anna, who has been working part time as a substitute teacher. With the kids out of school too, that means everyone can be together for the days of celebration and hopefully also some rest!
The wheelchair is still going through the approval process. We are hopeful it will be completed soon! We have also begun an appeals process with insurance to get Paul’s daily steroid approved. One side effect of such a large dose of steroids is developing cataracts. At the last eye appointment, the doctor saw a small spot on one of Paul’s eyes. He says it may not be connected to cataracts, but we will return to the eye doctor soon to make sure there has not been any growth of the spot. Also, he will be visiting the orthotics clinic soon to make adjustments to his leg braces. Paul still wears them every night to stretch his legs. Recently he has had to stop wearing them though because he has grown and they are causing sores where they are fitting too tightly.
In other news- we will be trying to move to another house soon, one that is more accessible or at least easier to modify for Paul’s needs. David and Anna carry Paul up and down the stairs now which is proving to be a challenge now that Paul is getting older. He will be 9 in a couple months! Our current house would not be very navigable with a wheelchair because it also has narrow doorways and passages. The kids are excited about the move at times and at other times feel apprehensive about it.
Paul is very happy about the Christmas break. As in other years, he has only one simple gift request for a toy. It seems that his favorite part of Christmas is to be with family and to relax away from school responsibilities.
Thank you for your continued support and best wishes to you for a wonderful holiday season!
Nov 12, 2017
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. He works hard in physical therapy and occupational therapy. 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...
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!