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. We see that Paul can still walk, run and climb stairs. However, he does these actions differently than other kids his age. 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 independently walk and move about his home and delay the time when he will need the wheelchair full time.
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 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!
Feb 23, 2017
Thank you for checking in! We recently returned from a clinic visit to Dallas. Their clinical trials and their connection to a Wellstone Muscular Dystrophy Cooperative Research Center made us...
Dec 13, 2016
Thank you all for your continued and generous support! We are still awaiting that phone call from Dallas telling us whether they will screen Paul to participate in the exon skipping trial. ...
Nov 04, 2016
We recently visited the clinic in Dallas. The pediatric neurologist there is the doctor involved with the exon-skipping trial. Paul has to be an established patient of hers in order to participate...
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!