February 20, 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 26, 2017
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!
November 25, 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.
September 6, 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.
August 8, 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 without worrying about falling or becoming exhausted. The wheelchair company brought over a chair to the house for a demo and Paul got to test out all of the buttons and drive it around inside. He’s really a great driver! We hope the chair order can be completed before too long so that he can begin using it at school. 3rd grade is just around the corner!
July 27, 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.
May 18, 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 month, but he has recovered with no problems. The steroids suppress his immune system so he tends to get whatever virus is going around school at the time. He is having difficulty keeping up with his peers these days; he chooses to sit out at recess. We will look into alternative activities he could do with peers during that time, such as playing with a remote control car. The playground equipment is also a challenge for him, both at school and at city parks. We know that summer is around the corner, which is exciting for Paul because he loves the neighborhood pool. Occasionally his physical therapy sessions are in a pool and it provides good, low-impact exercise for his muscles and lungs.
We have heard nothing more on the exon-skipping trial and are wondering if it will ever get up and running in Texas. Committing to a trial would be difficult with weekly travel and lengthy infusions. Perhaps it is best this way. Still, we may get a call tomorrow! We don’t know what to expect.
We were interested in buying a medical scooter for him to use around school and on outings. Paul’s neurologist said that she didn’t prefer that means of travel because it does not provide as much back support. Her recommendation is to buy a motorized wheelchair with good back support that would be custom-fitted for Paul. A motorized wheelchair would need an adapted vehicle for transport and Paul doesn’t need that kind of support all the time yet. However, a scooter would allow him to be more flexible and it would be easier to transport. We will take some time to consider the choices.
As always, thank you for your support!
November 12, 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 learn more about their clinic. Paul is doing well with his treatment. His immune system is weakened by steroid medication, so he has been sick with strep throat and a cold for several weeks. It is not anything serious though, and as usual, he has remained positive. He is beginning to feel more tired and less able to run around and play with the other kids at recess. However, he still loves to play with his sisters at home. The exon-skipping trial is not ready. We are hoping they will begin screening participants soon. Also, the steroid treatment Paul uses has recently been in the news. Deflazacort (which we import) has now been approved by the FDA for sale in the U.S. under the name Emflaza.
November 12, 2017
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 27, 2016
Excellent informational video about DMD: vimeo.com
Did you know Duchenne Awareness Day is on September 7th every year?
June 28, 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 have helped him maintain strength in his muscles and he even showed improvement on some of the physical tests. We are adding to his stretching regimen due to some tightening of muscles in his legs, but they are pleased by his progress in physical therapy. They talked with us about the future need for a power wheelchair and/or power scooter and will guide us with the process of choosing the right fit for Paul. We are beginning to look at vehicles that will be able to transport such a device.
June 2, 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.
May 16, 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, occupational therapy, and speech) but we recently added aquatic therapy. We switched to a new therapy clinic and they are amazing! We also found an organization in San Antonio called Kinetic Kids which provides sports and recreation for children with all kinds of disabilities. Paul has never been able to participate in extra-curricular activities before and we are so excited to sign him up this summer.
March 24, 2016
Thank you to everyone for your kind words and for your generosity. We are truly grateful for you all!
March 18, 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 25, 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.
