Monday, January 31, 2011 10:50 PM, CST Day 36 on VECTTOR 

We dropped our morning treatment per the doctor’s recommendations so we are only having to do one 80 minute treatment at night!!  YEA!!!  I was not sure we would ever get past the 30 day mark for two 80 minute treatments a day (morning and night) but we made it.  Gabe was such a trooper and did incredible.  I am also proud to say that Traci and I did not miss a single morning treatment and were diciplined enough to make it happen.  Great job Traci as it truly was a partnering effort and I could not have asked for a better partner!!!   This is a realtively short update but still a great one as progress continues to be made.  Gabe started school in August and I have mentioned before that I could count on three fingers how many green dots he has received (remember from previous posts that a green dot in our school system means a great day).  Since being on the machine he as received smiley faces every hour with the exception of one or two here and there (it is done by hour in his school for him).  He did have one BAD day a few weeks ago.  Friday was a perfect day with no sad faces and today was the best day yet!!!  A perfect day and a recognition from the Principal!!!!!!!  Yea!!!!  So Gabe got to go to the Principal’s office to receive a recognition!  He got off the bus, RAN in the house and yelled “Daddy…I got a Wekanition (misspelling intended)!!”  I could not believe my ears so I ran up the stairs and he had it stuck to his shirt with a sticker.  UNBELIEVEABLE!!!  This is what it said…there were four things checked:

1)     Showing Initiative
2)    Showing Effort
3)    Displaying a highly commendable attitude
4)    Other – Insisited on opening his lunch containers all by himself!!  Took a little while but he was able
to do it!!!

This is what his teacher, principal, and OT put on the recognition!!!  YEA!!!  You have no idea how incredible this is for him and us.  Parents of DMD children will understand but this is huge!  Way to go Gabe!!!  I am so proud of you and you are my hero!  Gabe’s Dad

Tuesday, January 25, 2011 10:29 PM, CST Day 29 on VECTTOR   Gabe has been doing 80 minutes in the morning and 80 minutes in the evening since 12/27/10 or approximately 29 days.  I wasn't sure what to expect but I must admit that the results we are seeing are at least remarkable.  The latest videos at the below link are of Gabe doing things he has NEVER done and is quite remarkable!  This time Gabe RUNS up stairs alternating feet WITHOUT holding on to the rail...WITHOUT holding on!!!  He has never RUN up stairs before much less done it without holding the rail.  He always would hold on to the rail.  When we would ask him to alternate feet in the past he could do it but he would hold on to the rail, slowly walk up the steps, and still do two feet on several steps while trying.  Last night he ran up the steps and did not hold on to anything (see the below link)!!! Gabe has also struggled to peddle anything!  He did peddle a hot wheel about 7 months ago on the sidewalk but did not go far and quit quickly.  He has never done it since or attempted it.  This link www.hopeforgabe.org/photosvideos.html shows him not only climbing the steps without holding on and alternating feet but peddling a tricycle multiple times!  These event to us are the most remarkable events to date.  In fact, Traci's sister was in town and saw Gabe run up the stairs and she was blown away!  He continues to have so much energy when he gets done with his treatments and is in the BEST mood!  All I know is since we started this treatment with the VECTTOR there are way too many positive changes with Gabe to count.  As I have said before...something is happening!!  Gabe's Daddy

Wednesday, January 12, 2011 10:40 PM, CST

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

Monday, December 27, 2010 11:26 PM, CST


Our trip started a little bumpy as we did not arrive at our hotel until 2:30 AM due to flight delays from bad weather throughout the country.  Gabe then had ear issues from flying and did not sleep much at all last night L.  As a result, we were expecting a horrible day today at Dr. Rhodes’ office.  However, Gabe slept during the actual consult while sitting in my lap.  As Dr. Rhodes video taped Gabe running, getting up off the floor, hopping on one foot, hopping on both feet, jumping, etc. thoughts went through my head from all degrees of any spectrum.  Is this equivalent to the “fountain of youth”, could this be the “real deal”, is this a “Christmas miracle”???  Not sure what the answer is but I do know that Dr. Rhodes knows what he is talking about and he seems to believe that he is going to do something that so many before him have failed to accomplish.  Regardless, here we are in Corpus Christi, Texas with all of our HOPE in the hands of a podiatrist! Oxymoron intended.  Gabe did extremely well today and essentially he sat there watching Despicable Me while he received his treatment.  At the end of the treatment I was shocked to find out that his core body temperature increased 6.6 degrees and during his night treatment it increased 7.3 degrees.  This is extremely important as lower body temperature means reduced blood and oxygen flow and allows atrophy to set in sooner.  I am not sure what is psychological at this point or factual but what I do know is his calf muscles feel a little  different (starting to jiggle) and his demeanor tonight has been incredibly good.  Dr. Rhodes says the machine makes these kids feel better and will help in cognitive development as well as behavioral development.  An example of this is when we went swimming tonight in our hotel pool (indoor) when I said Gabe it is time to go to the room he said no once but then said o.k.  No melt down, screaming, and kicking.  It was actually nice!  We are trying to be realistic and grounded but Traci and I both seem to comment on the same positive changes.  We shall see…I received many texts today and messages and thank you for all the kind words and prayers.  We have a long way to go and this is a tremendous commitment as it is 80 minutes in the morning and 80 minutes in the evening every day for the first 30 days and then 80 minutes in the evening after that.  We have many great supporters around us and for that we are so fortunate!  We will need you all going forward!!  I am so proud of Gabe as he stepped up and cooperated with the doctors without question.  At times he looked like one of the prototypes in the movie called “The Minority Report” but he did not complain…too muchJ.  He is my hero and stepped up like a champ today and tonight!  Think about if you were 5 years old and someone hooked you up to 8 electrodes (4 left/4right) and told you not to touch them, disconnect them, cross them, not to move a whole bunch, not to eat anything or drink anything, etc.  I couldn’t do it but Gabe did!!!  You are my hero Gabe!  Gabe’s Dad

Sunday, December 26, 2010 6:00 PM, CST

I am sitting in the Birmingham Airport waiting for our flight to depart for Corpus Christi, Texas.  I would not be telling the truth if I said I was not excited and anxious!  But before I get into the trip, I wanted to share a story with each of you about Gabe and the lives he touches.  We went skiing recently and when we were getting our equipment and lift tickets I asked if someone could take Gabe down the slope as he cannot ski.  The lady stated that for liability reasons, they could not and I totally understood.  Seeing how it was a smaller resort, we really got to know the instructors.  The second day we got there, an instructor named Charlie asked if Turner and Coop were excited about going down the slope again.  I said they had not quit talking about it.  He then asked about Addie and Gabe who were standing there.  I said Addie was too scared and that Gabe could not ski.  He said sure he can, we have taught children younger than him to ski before.  I said he cannot ski as he is a special needs child.  Charlie (who is a full time paramedic for his real job) asked what type of disease it was so when I explained it to him, his face totally changed.  His eyes filled with tears and he looked at Gabe and said "Gabe you want to go skiing?!”  Gabe looked up at him and with a huge grin shook his head yes.  Charlie then said “well then dad gummit, you are going to go skiing!”  Traci started crying tears of joy as Charlie went and got his ski boots and skis…he held Gabe while the lift took them up the slope, he got to the top, and down they came.  You could hear Gabe screaming “I’m skiing, I’m skiing!!!”  It was an incredible site as Charlie did this a total of 3 times.  When he was done, Gabe hugged him and kissed him on the cheek.  I shook his hand and hugged him myself.  I told him he had no idea how he just touched my family and he said “no…you have no idea hoe Gabe has touched my life!”  What a trip and what a moment!  I sometime lay in bed and picture it all in my mind again!!

I wanted to share that story with you as I am finding there are more and more incredible people in this world willing to make a difference!  Now…on to our current trip (see previous post).  We will meet with the doctor tomorrow for about 5 hours as he teaches us how to hook up the machine and how to run the protocols.  I will try and post daily and provide as many updates as I can but there are no guarantees.  Thanks for all of the thoughts and prayers!!!  We need them all and could not make it through this without each of you!  I hope every one of you hade a Merry Christmas and let’s all hope for one more gift the week after Christmas!  Gabe’s Dad

I have not had a potential treatment post for some time now and I debated whether or not to post this as I know the DMD community questions what I am about to post.  It is lengthy but very important.  Before I move forward, I find it ironic that the University of Florida’s semi new DMD program called ImagineDMD is in the process of starting a trial that addresses EXACTLY what Dr. Rhodes shared with us. The U of F trial addresses the lack of oxygen and blood flow to the muscles of DMD children.  Instead of going into detail about their trial, here is the link: http://www.imagingdmd.org/?q=node/100.   

Regarding Dr. Rhodes, Traci and I have made a very important decision and this decision leads us Dr. Rhodes in Corpus Christi, Texas.  I have been researching this doctor and this procedure for some time now and based on my research and my interviews with other parents that currently utilize this protocol for their DMD children, the results are astounding!  This doctor is a podiatrist and has a significant amount of experience with blood and oxygen circulation in the muscles.  He has years of experience in research and treatment of other chronic diseases exacerbated by oxidative stress. Initially his research and treatment focused on patients with Reflex Sympathetic Dystrophy Syndrome (also known as CRPS). Eventually his work led him to Diabetes, Parkinson’s Disease, and now with Muscular Dystrophy. He has come to the opinion that oxidative stress is a common link between all of these diseases.

All of these diseases share pathological changes in the body which can be traced directly or indirectly to a lack of oxygen at the cellular level throughout the body. As a Podiatrist, he has been trained to understand pathologies in the feet. In all of these diseases, oxidative stress shows up first and worst in the feet due to the distance from the heart and central nervous system.
Oxidative stress in Muscular Dystrophy patients is apparent by: 

• Diminished skin temperature in the hands and feet, particularly in the fingers and toes
• Increased capillary filling time in the toes
• Diminished circulation in the digital pulp of the toes in the presence of adequate circulation into the foot
• Changes in the bones shown by X-rays
• Diminished nervous system responses

The children with Muscular Dystrophy, who have been examined at their clinic, have all shown decreased foot skin temperatures, increased toe capillary filling times, decreased circulation in the toes while having normal circulation into the feet, subchondral cystic degeneration, and increased Vibration Perception Thresholds.  Of further interest, their clinic previously participated in a small study with Diabetes Type 2. These patients showed the same circulation, nerve, and bone changes seen in these children with DMD. At the completion of the study, many of these patients demonstrated improvement and in some cases, complete resolution of these problems. 

They have had a limited number of children utilizing this treatment but many are experiencing good results from the treatment. Subjectively, patients and their caregivers have reported improvements in strength, movement, balance, sleep, breathing and other areas affecting their quality of life. Objectively, they are getting reports from physical therapists of these patients reporting increases in strength, growth of muscle, flexibility and range of motion. He has also had reports of decreased calf measurements.  In addition, with VECTTOR treatment (the name of his machine), the parents of the children with DMD uniformly note that their children’s hands and feet are warmer. This is verified and quantified by Temp-Touch evaluation and is certainly suggestive of decreased oxidative stress. 

So far, only two blood tests of children with DMD before and immediately after the initial VECTTOR treatment have been obtained. Both tests demonstrated a significant decrease of TNF alpha. There have been two patients who have had CPK levels tested before and after several months of treatment. Both of these children have shown significant decreases. If you recall, CPK is the test they do to determine if a child has DMD.  The normal range varies but is usually around 200 or less.  Gabe’s was 20,000.  Since the exact parameters of these tests are so variable, they are reluctant to say anything other than that, while the results are encouraging, like everything else, they need further evaluation. 

All this being said, nothing means more than a direct conversation with the parents.  As an example, I spoke to the parent of an 18 year old boy who has not walked since he was 11 years old.  Before he started the treatment, he could not MOVE his arms off the wheel chair nor could he lift his head off the wheel chair and they were advised to schedule a tracheotomy. They started the treatments this past August and currently he is shaving his own face, brushing his own teeth, typing on a computer without help, able to move his head in a normal fashion, his urine was dark brown but is now normal color, he is no longer on Miralax for constipation, he is finally off his CPAP machine, his sleep apnea has gone away, he is breathing on his own, and he is GROWING MUSCLE BACK all since August!  Most DMD experts say once the muscle is gone, it is gone.  His physical therapist is measuring his muscles and they are getting larger plus he is gaining weight.  He has gone from an extra small shirt to a medium and has gone up 2 pant sizes as well.  They have even ordered a “stander” to help him stand again!!!  He now has HOPE again.  Some doubters may say false hope but regardless, it is hope.  They are now looking at special vans for HIM TO DRIVE HIMSELF!  According to all involved, there are no side effects with this protocol which made it a no brainer for us.  As an additional positive note, there is a 20 year old in England that has not stood on his own since he was 12 years old and after the treatments, they now have him putting 45% of his body weight on his legs with the help of a “stander”!!!!.  The doctor believes he will stand on his own by Christmas!!!  I cannot imagine a better present period!  Some will argue against our decision to move forward, but I would be curious to get their take on the below quote/article from the University of Florida’s DMD division:

Posted by U of F – Link: http://www.imagingdmd.org/?q=node/100
Sean Forbes, Ph.D., a member of the ImagingDMD team, has received an $180,000 grant from the Muscular Dystrophy Association to study whether a drug that improves muscle blood flow could slow the progression of Duchenne Muscular Dystrophy. “Muscles in children with Duchenne Muscular Dystrophy are missing a key enzyme that normally increases blood flow and oxygen during and following muscle contractions,” said Forbes, a postdoctoral associate in the College of Public Health and Health Professions’ department of physical therapy. “This reduced blood flow puts additional stress on the muscle and may contribute to damage that cannot be adequately repaired. This ultimately leads to reduced strength and loss of function, such as the ability to walk.” This is dated 11/1/2010 on their site. 

This is EXACTLY what the parent told me 3 months ago and what Dr. Rhodes told me 2 months ago.  He is not using a drug but instead he is using a machine.  Those of you that may have had a sports injury may have been hooked up to some electrodes to improve circulation in order speed up the healing process of the hamstring or whatever muscle injury may have occurred.  Conceptually this is similar.  

Traci is excited, I am thrilled, and all Gabe knows is he is going on an airpwane tribe (misspelling is on purpose for him) to Texbus.  We will fly out 12/26 and meet with the clinic all week then fly back with the machine on 12/31.  We will do all the protocols in the comfort of our house.  This will consist of one 80 minute treatment in the morning and one 80 minute treatment in the evening for the first month alternating upper and lower body.  After the first month it is only 80 minutes in the evening.  I must admit I was excited but when I saw the article about the University of Florida trial and their definition of DMD and what the lack of Dystrophin does in the body, I am now convinced this doctor is on to something.  Especially since the U of F comments are identical to what the clinic and parents shared with me.  

As a parent, it is my job to give my child the best chance at life and there are many tough decisions that must be made.  I have prayed and prayed about this and believe this is the right thing to do for our journey.  I will keep everyone posted as best I can but know this, I refuse to let this horrible disease take my son’s life without a serious fight!  The questions from my children are getting tougher to answer but my HOPE is that one day soon I can say we were faced with a horrible horrible disease yet God gave us the strength, knowledge, and courage to defeat it!  Gabe - You are my HERO and through God we have HOPE!  Gabe’s Daddy

Sunday, October 17, 2010 10:08 PM, CDT 

Traci and I have so much going on that at times we think to ourselves, are we doing what is right when it comes to raising our children?  Are we spending the right amount of time with them explaining what is important in life and what things are simply trivial?  Are we providing a faith filled environment all the time for our children though our own faith may be tested by Gabe’s journey?  When our children ask why Gabe gets to do things we don’t let them do, like sit out during the middle of a T-ball game, are the answers we provide the right ones?  Questions like where does Santa live, when can we get our elf back, what does the tooth fairy do with my used tooth, how big is the Easter bunny if it can carry all those large baskets and if it hops, how come none of the goodies inside the baskets fall out, all seem so easy to answer compared to the questions we are starting to get from our children regarding Gabe and this terrible disease!  Well tonight the questions totally took a different direction.  The usual simple questions about Gabe are starting to fall to the side as Turner is starting to hear things and notice things.  No more comments like why can’t Gabe play football, why can’t he jump on the trampoline, why do we always have to carry him up the stairs, why does he go down the stairs on his bottom, why does he sleep in boots every night, why do you have to stretch him every night but not us…etc.  Tonight was a milestone that I knew was coming but was not ready to address.  Shame on me for not being ready for it but I can tell you, Traci handled it like a champ!  She was helping Turner with his book report (of course it is due tomorrow) and out of the blue, Turner (our 9 year old) asked “is Gabe going to be in a wheel chair between the ages of 10 to 12?”  For those of you that have followed our journey, does this sound familiar??? It should!  Traci said that we are trying to find some help for Gabe and if we can find the right medicine for his muscles it may not happen, but there is a strong chance he may be between those ages.  He said “Oh”.  She asked where did you hear about this and he said that somebody on his football team said their dad said to pray for Gabe every night because he will most likely be in a wheelchair between 10 and 12 years old.  He then asked “does Gabe know about the wheelchair?”  Traci said no he does not and please do not ever share that with him.  Turner said “I would never do that!”  Traci asked, “How does that make you feel hearing that about Gabe?”  At this moment Traci is holding back the tears and scared to death of the next response that is going to come out of our 9 year old’s mouth.  His next comment is what prompted this post…Turner said “I just know that I’m going to be the one to push him!!”  Traci is now crying and she said how will that make you feel Turner?  Turner said “so proud mommy, I want all of my friends to see me pushing Gabe in his wheelchair!”  WOW!!!  How incredible is that comment from a 9 year old who is still trying to figure out how to be a 9 year old???!!!  He took it as matter of fact and matter of fact he was going to be the one to push Gabe around anywhere he wants to go!!!  I am more proud of him for these comments than for anything else he has done to date.  I know that words probably do not describe this discussion accurately but she said if you could have seen the look on his face and how proud he looked when he said I will push Gabe anywhere he wants to go…priceless!  The next question was a little concerning as we do not want Turner to hear about this being 100% fatal by as early as the teen years from anyone other than us.  His next question was “Mom, what is going to happen when he is 15?”  He also asked if they have anything yet to fix him.  Traci did an incredible job answering this unanswerable question.  She simply said we have a bunch of good things going on and hopefully he will be Ok at 15!  At this moment and when Traci shared this with me, we realized that we have not lost focus on raising our children and they are incredible kids surrounded by incredible people!  Not a week goes by when one of our kids doesn’t ask if they can donate their piggy banks to Hope for Gabe.  I am so proud of Turner and even more proud of Traci for how she handled the situation!  We must now hunker down and get ready for even tougher questions.  We have to figure out a way to tell Turner the whole story about Gabe but must do it at the right time.  I would die inside if Turner came through the door from school one day and said that someone at school said Gabe could die by the time he’s a teenager.  He needs to hear it from us but I am not sure when the time is right.  I know so many parents are trying to help their children understand what Gabe is going through and they should be so thankful for the lives they have and their abilities!  Hopefully many kids are going to be better children and better adults for having Gabe in their lives!  I know I am sure a better person…Gabe’s Daddy