I hate to start on a sad note but in honor of these boys I feel the need to start as such…today we lost a 13 year old boy and a 16 year old boy to this disease that has come to consume my family…DUCHENNE!!! I HATE THIS DISEASE! Are you kidding me…13 and 16???? Gabe will be 13 in 7 years. I know that life is not sometimes fair but this truly sucks! This is the greatest country in the world with the greatest minds and it is hard to believe that the last disease we truly “CURED” was Polio???!!! I will end this segment by saying this…I am so proud and honored to have walked along side this 13 year old and 16 year old boy! May God be with you as you have reached a place that we can only dream about being one day and the BEST part…your pain is gone and you walk again! This time along the side of God!
Forgive me in advance for the topic here…After day 46 on VECTTOR Gabe continues to amaze in the classroom with a good week. He seems to be in a great mood majority of the time and is getting along with his siblings so much better! But as I stated before, I look for hard core facts to tell me this machine is doing what I think it is doing…making Gabe better (not cured but feel better), act better, and do things he COULD NOT do before. This time it is his bowel movements. Boys with Duchenne typically have major trouble going potty without the help of a laxative as the rectum is a muscle as well. Gabe has been on Miralax for over 2 1/2 years. We were told by Dr. Rhodes that if we keep him on it he will end up having MAJOR diarrhea. So we stopped him cold turkey. He immediately got constipated on day 2 and was in pain when he went. We put him back on it. As info, the main chemical in Miralax is also the main chemical in anti-freeze…Google it. So we wanted him off of Miralax bad! Once we put him back on it he started going again. Then we talked to Traci’s sister who is a Dr. of Pharmacy and she said you cannot stop him cold turkey but must wean him off of Miralax since he has been on it for so long. His body counts on Miralax to help him go. So we slowly reduced the amount and got down to 1/8 of a cap full when we decided to stop and remove Miralax from his regimen. Needless to say, he has been off of Miralax for 2 1/2 weeks and has been regular every day WITHOUT Miralax!!! Thank goodness as this is one less supplement we have to worry about. I am so proud of Gabe as he continues to do his treatments without complaining for the most part and it is SO clear to us that he just FEELS better! Keep it up Gabe, you are my hero! Gabe’s Daddy