May 16, 2020

Greetings, friends and family-

The school year is winding down in a much different fashion than anyone could have imagined. We have traded in family gatherings, school performances, award ceremonies, medical appointments and weekend outings for FaceTime, online learning, social distancing and home activities. Being ever mindful of Paul’s weakened immune system and weaker breathing muscles, we have been careful to obey social distancing norms.

This year has been a very different year for us all! At the end of October, an opportunity for me to return to work presented itself, and after much prayer and family discussion, I decided to accept the job. As a result our entire routine changed. Unfortunately, it also means that I fell behind on posting updates here!

Currently we have not been going to regular doctor appointments or therapy visits as we are avoiding medical establishments during the COVID-19 virus. Paul’s next big multidisciplinary clinic visit will be this summer. We had intended to get a PT evaluation for aquatic therapy over spring break so that Paul could receive regular aquatic therapy during the summer months as recommended by the doctor. However, I am not sure he will be able to do aquatic therapy this time around. We hope and pray every day for a return to normalcy. We grieve the loss of so many whose lives ended too soon because of the virus, especially that of a dear extended family member.

Next year, Paul will begin middle school but we do not know yet what the school year will look like. We feel nervous about sending Paul into any crowds. The school district is currently gathering information and feedback from the community in order to make decisions about the next school year. We are taking it one day at a time. During the time of online learning, Paul has learned to work proficiently with assistive technology tools to assist him with writing and other academic tasks. We are excited for the skills he has been able to practice because they will be beneficial when he does return to the classroom. He also has been practicing to “drive” his wheelchair with the battery-powered wheels we were able to purchase thanks to the generosity of our friends and family. This is a makeshift solution to his mobility until we are able to purchase the power wheelchair. Once we commit to the power wheelchair, we will also have to purchase the adapted van in order to transport the chair. Again, thanks to the generosity of friends and family, we have funds in order to do that. Now, it is a matter of timing. We will track how things progress with the virus and carefully consider when interacting with the providers for these things is safe. Paul would need to be assessed by the physical therapist and measured by the assistive technology representative and then we would need to visit dealers of adapted vans.

Sending our well wishes to you for health and peace during this time of uncertainty!

July 25, 2019

It’s hard to believe that it’s been a year now since we moved to the Houston area. We feel quite at home in our new community and are grateful for all the support and services we have here.
Paul has had many medical appointments this summer, but thankfully has still had frequent opportunities to visit the pool as well as go on other fun outings. The pool is a great place for Paul because of how freely he can move in the water without feeling like his muscles are weighing him down. The under water exercise is also good for his breathing muscles.
His multidisciplinary clinic visit was last week and we are continuing with the daily steroid treatment. The doctors are pleased with how he has maintained his ability to get around. His breathing test showed some weakening in his breathing muscles which will mean he needs to see the pulmonologist more frequently than before. This is not unexpected. Usually age 10 is the time when a child with DMD needs to have more frequent tests and checkups especially with the cardiologist and pulmonologist. Paul will be getting new orthotic braces for his legs for nighttime stretching (to prevent contractures). He can walk but uses a manual wheelchair out in the community, for example at parks, malls, museums, or between classes at school, to minimize falls and exertion. He cannot self-propel the manual wheelchair so we hope to purchase power assistance devices for his chair. These include a joystick for his manual wheelchair and battery powered wheels (which would be interchangeable with his regular wheels). It is an “in-between” solution before getting a power wheelchair so that we can continue to easily transport and stow his current chair yet give Paul more independence by allowing him to “drive” his own chair. Unfortunately the power assistance devices most likely will not be covered by insurance. The insurance company has difficulty understanding the progressive nature of his disorder and that all his muscles are impacted (not just his legs) and that the more he uses his muscles, the more they can become damaged.
We feel extremely grateful for the generosity people have shown to us and to Paul. I can’t tell you how many times we go to the mailbox and pull out a medical bill that makes our jaws drop to the ground. Then our second reaction is one of relief that we are not in this alone.