Tuesday, July 26, 2011 11:40 PM, CDT
Years ago when I was in Junior High we had to learn the words to a poem by Robert Frost called The Road Not Taken and give an interpretation of the poem. At that time I was annoyed at the thought of having to learn the entire poem verbatim plus describe its meaning to me, a then young teen! I remember back then coming up with some corny description of the poem and hoping to get a passing grade. Well I got a good grade and moved on never thinking about that “ridiculous” poem until now. As parents there are many times we are faced with a fork in the road and would love to be able to look down both roads equal distances and see what awaits us in order to make the best decision. That is a rare luxury in the parenting world. Earlier today Traci and I came to a fork in the road along our journey with Gabe, and after looking down both roads as far we as could, we had to make another tough decision on this journey! We decided to take the road “less traveled by”. Any parent with a child who has Duchenne (DMD) probably has already figured out what I am referring to, but in the event some may not know, we decided to start weaning Gabe off of steroids today! Just as difficult as it was to start the steroids (if you recall we had the prescription in hand and filled for 8 months before starting Gabe on them), it is equally difficult to stop them. Steroids today are believed to be the only way to extend mobility and heart health to name a few in DMD children, but at a horrible cost. The cost…extreme side effects such as bone brittle disease, weight gain or bloating, major behavioral changes, diabetes, stunted growth, cataracts, and many more. We prayed and prayed and talked to many many doctors about this decision before we decided to start the weaning process. I believe God puts people in your life for various reasons. Sometimes we do not know why, but throughout our journey on earth we figure it out. We have been blessed to have many DMD parents in our lives but one set of parents stand out. They know who they are and by their decision to wean their son off of steroids we found the strength to do the same. They are both doctors and after talking with them and our own doctors at Children’s here in Birmingham, we made the decision. As info, our doctor here in Birmingham was very supportive, open minded, and understood our rationale for weaning him. We know how Gabe is on steroids alone, we know how Gabe is on steroids and the VECTTOR machine, but we do not know how Gabe is just on VECTTOR and that is our goal. Gabe has done so well and is doing so many things since starting VECTTOR we need to see what is the machine vs. what are steroids. Today Traci called me in the kitchen and wanted me to be the one to give Gabe his 7.5M of steroid vs. the usual 15M we give him every day. I must admit after I did it I went and said a prayer for a sign that we are doing the right thing. I am still waiting for the sign but in the meantime I hope God has given us the wisdom to make the right call. This is the “road less traveled by” as probably 85+% of DMD children are on some sort of steroid. There are many blogs out there for DMD and the mere mention of stopping steroids is like opening the flood gates for confrontation. But when I look at Gabe who is about 3 inches shorter than his twin sister, starting to get hair on his back, and has some behavioral issues, I truly want to vomit every time I give him that stupid white pill! As we continue down the road less traveled we have HOPE! My HOPE is the behavioral issues reverse. My HOPE is he starts growing again and will catch up with his friends. My HOPE is that his belly will get smaller, his spine will not curve, and his beautiful face and appearance will not change drastically. My HOPE is the VECTTOR and the Protandim that he is on will continue to do the remarkable things they are doing in the absence of Deflazacort. My HOPE is we will be able to reduce the number of pills he takes daily to counter the steroids. My HOPE is God gives us strength to carry this out. My HOPE is God give us the insight to recognize if Gabe starts getting weaker after stopping the steroids. My HOPE is Traci and I stay strong and do not waiver from our decision unless the signs are truly present. My HOPE is Gabe looks back on this decision and says THANK YOU! My HOPE is we learn exactly what the VECTTOR is doing without the steroids. My HOPE is when Gabe asks when I quit walking will I be in a wheel chair (which he has now asked) I can say that by stopping steroids and using VECTTOR we are allowing him to walk longer and stay out of a chair longer though most doctors will say the contrary. My HOPE is by choosing the road less traveled we change our lives and we help our son! My HOPE is by choosing the road less traveled we are doing what God is instructing us to do! My HOPE is by choosing the road less traveled Gabe looks at me one day and says Thanks Dad! My HOPE is by choosing the road less traveled I don’t ever regret not taking the other road! Gabe you are my hero! Gabe’s Daddy
Years ago when I was in Junior High we had to learn the words to a poem by Robert Frost called The Road Not Taken and give an interpretation of the poem. At that time I was annoyed at the thought of having to learn the entire poem verbatim plus describe its meaning to me, a then young teen! I remember back then coming up with some corny description of the poem and hoping to get a passing grade. Well I got a good grade and moved on never thinking about that “ridiculous” poem until now. As parents there are many times we are faced with a fork in the road and would love to be able to look down both roads equal distances and see what awaits us in order to make the best decision. That is a rare luxury in the parenting world. Earlier today Traci and I came to a fork in the road along our journey with Gabe, and after looking down both roads as far we as could, we had to make another tough decision on this journey! We decided to take the road “less traveled by”. Any parent with a child who has Duchenne (DMD) probably has already figured out what I am referring to, but in the event some may not know, we decided to start weaning Gabe off of steroids today! Just as difficult as it was to start the steroids (if you recall we had the prescription in hand and filled for 8 months before starting Gabe on them), it is equally difficult to stop them. Steroids today are believed to be the only way to extend mobility and heart health to name a few in DMD children, but at a horrible cost. The cost…extreme side effects such as bone brittle disease, weight gain or bloating, major behavioral changes, diabetes, stunted growth, cataracts, and many more. We prayed and prayed and talked to many many doctors about this decision before we decided to start the weaning process. I believe God puts people in your life for various reasons. Sometimes we do not know why, but throughout our journey on earth we figure it out. We have been blessed to have many DMD parents in our lives but one set of parents stand out. They know who they are and by their decision to wean their son off of steroids we found the strength to do the same. They are both doctors and after talking with them and our own doctors at Children’s here in Birmingham, we made the decision. As info, our doctor here in Birmingham was very supportive, open minded, and understood our rationale for weaning him. We know how Gabe is on steroids alone, we know how Gabe is on steroids and the VECTTOR machine, but we do not know how Gabe is just on VECTTOR and that is our goal. Gabe has done so well and is doing so many things since starting VECTTOR we need to see what is the machine vs. what are steroids. Today Traci called me in the kitchen and wanted me to be the one to give Gabe his 7.5M of steroid vs. the usual 15M we give him every day. I must admit after I did it I went and said a prayer for a sign that we are doing the right thing. I am still waiting for the sign but in the meantime I hope God has given us the wisdom to make the right call. This is the “road less traveled by” as probably 85+% of DMD children are on some sort of steroid. There are many blogs out there for DMD and the mere mention of stopping steroids is like opening the flood gates for confrontation. But when I look at Gabe who is about 3 inches shorter than his twin sister, starting to get hair on his back, and has some behavioral issues, I truly want to vomit every time I give him that stupid white pill! As we continue down the road less traveled we have HOPE! My HOPE is the behavioral issues reverse. My HOPE is he starts growing again and will catch up with his friends. My HOPE is that his belly will get smaller, his spine will not curve, and his beautiful face and appearance will not change drastically. My HOPE is the VECTTOR and the Protandim that he is on will continue to do the remarkable things they are doing in the absence of Deflazacort. My HOPE is we will be able to reduce the number of pills he takes daily to counter the steroids. My HOPE is God gives us strength to carry this out. My HOPE is God give us the insight to recognize if Gabe starts getting weaker after stopping the steroids. My HOPE is Traci and I stay strong and do not waiver from our decision unless the signs are truly present. My HOPE is Gabe looks back on this decision and says THANK YOU! My HOPE is we learn exactly what the VECTTOR is doing without the steroids. My HOPE is when Gabe asks when I quit walking will I be in a wheel chair (which he has now asked) I can say that by stopping steroids and using VECTTOR we are allowing him to walk longer and stay out of a chair longer though most doctors will say the contrary. My HOPE is by choosing the road less traveled we change our lives and we help our son! My HOPE is by choosing the road less traveled we are doing what God is instructing us to do! My HOPE is by choosing the road less traveled Gabe looks at me one day and says Thanks Dad! My HOPE is by choosing the road less traveled I don’t ever regret not taking the other road! Gabe you are my hero! Gabe’s Daddy
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