How does it feel to be the parent of your child?
Carlos is a fun and loving young boy who loves life. He is my inspiration! I never new what Muscular Dystrophy was until Carlos was diagnosed with the disease which was devastating news. There was a flood of emotions that ran through me that day. The first thing I did when I got home was start researching about the disease. I was scared for him and the more I learned about the disease the worse things got. I wish I could take it away from him, I wish he could live a normal, happy life but we were dealt this hand and are making the best of it. The worst part about it is seeing how he gets treated just because he is different and there is nothing that I can do about it. There are many challenges that I, as a mother, am faced with on a daily basis along with the family as a whole but the challenges are met head on and the hurdles are jumped. It is not always easy but I could not imagine a day without Carlos.
How is your child developmentally the same or different from other children at the various ages?
Carlos was born a happy, healthy baby boy. He grew just like any other normal baby boy but sitting and walking took him a little bit longer to master than for other children at his age. We just figured he was a late bloomer. Once he finally began to walk we noticed that he would get up off the floor in an unusual way. He would start on his stomach, stick his butt up in the air and use his hands to walk up his legs to a standing position which I later learned is called the Gowers manoeuver. He fell often but I just thought he was a clumsy little boy. He eventually began having difficulty climbing the stairs at home which was when I thought something wasn't right. I took him to his pediatrist who recommended a muscle biopsy which resulted with his diagnosis.
Slowly his condition began to worsen. His posture gradually changed. He began walking on the balls of his feet and he would protrude his chest and butt to stay balanced. We are looking into power wheelchairs because is having a hard time keeping up with us as we walk and gets tired very quickly. As he gets older there are many complications such as scoliosis that are common which could possibly require surgery to fix.
What professionals/agencies do you deal with? What services are available to you and your child?
We deal with a plethora of people. Once Carlos was officially diagnosed we were sent to a neuromuscular specialist which keeps track of the progression of the disease. They do regular assessments on the function, strength and range of movement which defines the phase of the disease. We also have an orthopaedic specialist to monitor tendon contractors and for scoliosis. We also have been referred to a pulmonary specialist for management of respitory funtion. As the disease progresses the muscles for breathing weaken and could need interventions such as ventilators to help Carlos breath and lessen respitory infections that could easily become very serious health problems. We have a cariologist that monitors his heart health. He sees a physical therapist regularly and has a physhologist to help him cope with the disease.
There are a number of associations such as the Muscular Dystrophy Association (MDA) and Parent Project Muscular Dystrophy (PPMD) that allow us to connect with other families who are dealing with MD just like us. The MDA offers summer camps for children with Muscular Dystrophy which Carlos looks forward to every summer. It is great for him to be surrounded people who don't view him as different. He has people he can relate to and who understand what he is going through.
How did you find out about the above services?
Well as soon as Carlos was diagnosed I started researching until I was blue in face. I wanted to know any and everything about the disease so I could make his life as good as possible. I mainly did internet research and as I began joining communities and networking I began learning more and more. Once I found a neuromuscular specialist they began referringus to all of the other doctors and specialists that we work with now.
What financial burden, if any, are you experiencing?
Although our insruance does help with the medical bills, the more the disease progresses the more expensive it is becoming. We have invested in braces that Carlos uses to sleep that help him with his contractors and allows him to sleep more comfortably throughout the night. He still walks at this point but we are looking into a power wheelchair to give him more independence and we are learning that they are not inexpensive but you can't put a price on happiness and comfortability. We also have Carlos's steroid treatment which he has been on since around the age of 5. This treatment helps prolong the use of his muscles and slows the deterioration process. We are in the process of making our house wheelchair accessable which means widening doors and builidng ramps but it isn't turning out to cost us as much as it could considering my husband is a handyman and we are doing a lot of the projects ourselves.
What other information do you want to share?
Muscular Dystrophy (MD) is a physical disability. Carlos is just as able minded as any other child. Although life may be a bit more difficult he feels just like other children. There are multiple different forms of MD some more severe than others. Duchenne MD is the most severe and only affects boys. There is nothing than can be done to prevent it because it is a genetic disease that is passed down from parent to child.
Glogster - http://cooper24.edu.glogster.com/muscular-dystrophy/
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