December 26, 2020
Merry Christmas and a happy New Year!
We hope and pray that 2021 will bring many changes for the good- especially the slowing down COVID-19 and getting closer to the end of this pandemic.
We mourn those who have lost their lives to COVID-19 and are learning a better appreciation for things we may have taken for granted before. Even though the virus prevented us from holiday gatherings this year, it feels like a small sacrifice compared to some of the really large sacrifices others have had to make because of the coronavirus. We are thankful to live close to family so that even though we meet outdoors and with masks, we at least get to spend time together.
All 5 of us are working from home, as students and/or employees. We are thankful that this was an option made available to all of us. Paul’s doctors have recommended that we self-quarantine as a family. Paul has done an amazing job with online school and learning how to make his assistive technology tools compatible with the new learning platform. This experience of diving head first into online learning has really benefited him in the long run.
Paul recently had his multi-disciplinary visit with the MDA clinic. The clinic is not currently scheduling face-to-face visits due to the virus and so all the doctors met with us virtually. Paul needs some scans and tests, but we will wait a bit longer to do those until more people have been vaccinated. In the meantime, his pulmonologist ordered a pulse oximeter and cough assist machine for home use. This equipment is especially important to have in the event that Paul has any kind of respiratory illness. The cough assist machine is also a new addition to his daily stretch routine. Just as the ligaments in his limbs get tight and are developing contractures, the ligaments involved with his breathing muscles also are getting tight. The cough assist machine stretches those to help slow down the tightening. Paul has done an amazing job adjusting to this particular stretch routine, even though I’ve heard it can feel unpleasant. We are so grateful for your assistance in being able to procure this latest medical equipment. Thank you for your prayerful encouragement and giving spirit.
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.
October 23, 2018
We just recently completed the first nine weeks of the school year and all of our children have adjusted well to their new school. We are especially pleased to see the compassion that is shown to Paul by his numerous teachers and by his peers. Paul has had a couple minor injuries and some leg cramps, but nothing serious. He enjoys going out to recess this year but he is still trying to learn how to pace himself and recognize when he needs to take a break. He is certainly exhausted by the end of the day! He continues to have an avid interest in all things Minecraft and Super Mario Brothers and he enjoys activities involving coding, robotics, science and engineering.
We will have our first visit to the neuromuscular clinic at Texas Children’s Hospital in January 2019, where in addition to seeing a neurologist and a PM&R (physical medicine and rehabilitation) doctor, he will also see a cardiologist, pulmonologist and other specialists. He will be turning 10 in February which means they will need to start monitoring his heart and lungs more closely (once a year rather than every 2 years). While we still greatly appreciate the care at the Duchenne certified clinic at the Children’s Hospital Colorado, we cannot ignore the fact that traveling there takes us away from our other children and creates stressful traveling situations. We will see how the January appointment goes and take it from there.
As always, we feel humbled and honored that you have taken such an interest in helping Paul and the rest of our family. We are truly thankful!
July 14, 2018
It has been a busy summer but we have felt God’s provision throughout all of the busyness. The sale of our home in San Antonio went smoothly and we have now relocated to Houston. We were able to find a one story home close to David’s new job. It is much more accessible than our last house and will be easier to modify to accommodate Paul’s future needs.
We have started the process of finding new doctors and specialists for Paul in Houston. The medical care possibilities are much greater here and we already feel like Paul is benefitting from that. His certified Duchenne care clinic appointment in Colorado will be next week and we always appreciate the good care they give Paul there. Over this next year we will investigate the medical care in Houston and we may be able to centralize everything here with a neuromuscular clinic.
As with any transition, there has been some stress associated with adjusting. Paul has handled it well. He is still moving around well but we notice he falls more often and his walking takes more effort. We have used his manual wheelchair a lot and having it has enabled us to go out and enjoy activities as a family without worrying about Paul being too tired or about him falling. It also helps us take him around to his medical appointments and he will be able to use it at school to navigate about the building.
Thank you for your continued support and we hope you are enjoying the summer.
February 17, 2018
After a bout with the flu (despite the vaccine) and strep throat, Paul is doing well. We are thankful that he did not experience any complications and is completely recovered.
We are also thankful that we have been able to move forward in several areas of Paul’s care. The sores on his heels have healed and his new leg braces will be ready next week. In addition, his wheelchair order is being processed and we are hoping it will arrive by the end of this month. This is a process we began last summer and we have learned a lot along the way, namely that these things take a long time! Unfortunately the insurance denied our request for a power wheelchair, which is essential, because Paul has weakened muscles all over his body, not just in his legs. For now we are settling for the manual wheelchair while he borrows a powerchair at school. Soon we will appeal the denial for the powerchair. We are trying not to use all of the funds people have so generously donated on one single purchase because there are so many ongoing expenses and some home and vehicle modifications close on the horizon.
Most notable of all the things that have occurred over the last several weeks was the occasion of Paul’s 9th birthday! We all celebrated as a family with a special dinner at his favorite restaurant and a Yoshi cake. (Yoshi is a character from Super Mario Brothers and a stuffed version of him is a frequent companion to Paul). HAPPY BIRTHDAY, PAUL!
December 24, 2017
Merry Christmas and a Happy new year!
We are enjoying a break from the busyness of work and school days.
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.
Thank you for your continued support and best wishes to you for a wonderful holiday season!
September 2, 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.
June 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 wheelchair. The doctor also recommended a backup pediatric manual chair. It is difficult to travel by airplane in a power wheelchair, so having the manual chair will help with that and in any other situation in which the power chair is impractical. A manual chair as his only wheelchair is not recommended because his weakened arms would have difficulty pushing the wheels. Also, if he were pushed everywhere, he would lose his independence (important to an 8 year old!). We will not need an adapted van yet, but will instead look at an attachment that can carry the wheelchair on the back of our vehicle. Paul can exit a wheelchair to climb into the car. Later in his life, he won’t be able transfer out of the chair and into a car, and that is when we would need an adapted van with a ramp, lower floor, and wheelchair clamps.
It is difficult to come to terms with needing to buy this equipment already. He moves with more effort and strain and he becomes tired quickly. The clinic is concerned about over-exertion and how these actions are damaging to his muscles. We want to maintain his abilities without causing damage. If he can use the chair on family outings and during distances around his school, he’ll have more energy and ability to use his muscles in specific ways. If he causes damage to his muscles by over-use, then the ability he has will be negatively impacted. We want to prolong the amount of time he can move about his home and delay the time when he will need the wheelchair full time.
December 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 appointments. Paul is very excited about Christmas. A sweet thing about Paul is that he always has very simple Christmas gift requests. One year he just wanted a batman toy that only cost $15 and nothing else! This year he just wants a clock for his bedroom wall and a Minecraft stuffed animal. For Christmas, he is mostly excited about the time he gets to spend with his family. It is humbling to me to see how easily he can find joy and contentment in his life. Sweet kid.
September 14, 2016
Excellent informational video about DMD: vimeo.com
Did you know Duchenne Awareness Day is on September 7th every year?
May 31, 2016
blog.helphopelive.org
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.
March 22, 2016
Thank you to everyone for your kind words and for your generosity. We are truly grateful for you all!
February 29, 2016
Paul is featured in the HelpHOPELive blog post for Rare Disease Day (02/29/2016). Check it out on the HHL homepage! blog.helphopelive.org
January 23, 2016
Paul is now receiving weekly physical therapy and continues to wear leg braces at night. He began daily steroid treatment which will help slow the progression of the disease. The steroids have significant side effects. We are trying a steroid only available from Europe or Canada because it is supposed to have less severe side effects. It is not made in the U.S. yet, so we ship it from the UK. Upcoming decisions involve when to purchase a minivan (wheelchair accessible modifications can be added later) because Paul is having difficulty climbing in and out of our current vehicle. In addition, we are discussing when to purchase a power scooter to help Paul conserve his energy around in the school hallways and at other places.
