On the light side…my kids joke that Gabe’s machine is called VECTTOR and the villain in Despicable Me is called Vector…lot’s of jokes around our house on that one.
Anyway…not sure where to start! As I talk to everyone, I try to keep the psychological separate from the factual. It is easy to say that Gabe did not fall down today so it must be the machine (psychological). However, we are seeing definite differences after starting the machine and all of them are positive. As I have stated before, I am the aggressive optimistic one and Traci is the realist bordering pessimism one. That being said, we agree on what we are seeing 100%. As you have read in the past, before the machine, Gabe could NEVER hop on one foot or stand on one foot. He continues to do this (as we try to get him to once a day to monitor it) and he is getting better and stronger at doing both. He is standing on one foot longer each time and hopping better then the last Friday in Texas. His behavior has done a 180 degree change. Before the machine I could count on three fingers how many green dots Gabe received at school (this is a way they measure Kindergarten kid’s behavior in our school system and usually keeps them in check). Gabe has struggled since August with his behavior in school. Since starting the machine and returning to school on January 4th he has received nothing but green dots with only 2 sad faces (which does not change the card color). THIS IS UNBELIEVABLE FOR HIM!!! Dr. Rhodes did say that autistic children were on the machine and their behavior changed dramatically. He said this positive change would happen in DMD children as well and we are starting to see this change. He is getting along better with his siblings, sharing, does not seem to tire as easy, is sleeping better, and is in a great mood 90% of the time. As mentioned previously his calf muscles are much softer (closer to normal) and are starting to look like normal calves without that “superman” muscle look. To date we have not seen anything negative while utilizing the machine other than the time it takes to run an 80 minute protocol in the morning and an 80 minute protocol in the evening for the first 30 days. My hope is Dr. Rhodes creates a way to run both protocols at the same time instead of two separate 40 minute protocols. Regardless, we would do it 5 times a day if it continues to show progress!
We are trying to document as much as we can and my blog is a way to do this. We have measured the circumference of Gabe’s calves and will recheck in the next 30 days. We are also trying to think of things he has NEVER been able to do before the machine and see if he can do them now (similar to the hoping on one foot and standing on one foot). So I thought for a while when it hit me…GABE HAS NEVER BEEN ABLE TO PEDDLE A TRICYCLE, HOT WHEEL, BICYCLE, ETC. It just takes way to much muscle power to push the peddles in the motion that is required to move the wheels. Well I decided to test this since we have been on the machine 17 days. Are you ready for the results??? You sure?? We placed Gabe in our garage and put him on his big wheel and…………………………………………HE FREAKIN PEDDLED AROUND THE GARAGE!!!! So I decided to put him on his tricycle and………………………………HE FREAKIN PEDDLED AROUND THE GARAGE!!!! I know this does not seem much to parents of children with normal 5 year olds but to see Gabe do this was incredible for me, Traci, and my other children who were in the garage cheering Gabe on as he peddled!! It always broke my heart when Gabe’s best friend Brooks from next door would come over riding his tricycles or other bikes and Gabe would be on his hot wheel scooting around using his feet on the driveway and not peddling. It didn’t bother Gabe but did bother me. After tonight I said now you can ride your tricycles with Brooks and he smiled so big!!! Things are definitely different in our house now and each day I am excited about the treatment because I cannot wait to see what Gabe may do next. I am still trying to stay grounded along with Traci but at this moment, we have nothing else. Gabe has been an absolute angel about the machine and protocols. He hops up in the bed, chooses his movie to watch and lays there as Traci and I hand feed him and give him his drink since he is not allowed to touch anything that can change is finger temperatures. This little guy just sits back hooked up to 10 wires, unable to move a whole bunch, not supposed to touch anything that will change his temp, watches his movie, and rarely complains! Gabe you are my hero and there is no way I could do that!!! Gabe’s Dad