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Day 36 on VECTTOR

1/31/2011

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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
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Day 29 on VECTTOR

1/25/2011

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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
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Day 26 on Vecttor!!

1/21/2011

1 Comment

 
  • Friday, January 21, 2011 11:39 PM CST 

    Still doing 80 minutes in the morning and 80 minutes in the evening but I must admit…though this is very time consuming, Gabe has been an absolute ANGEL about his treatments and he is starting to do more things he has not been able to do prior to the machine!  I mentioned in a previous post that he was now able to peddle a tricycle and hot wheel, his energy level was up, he was getting good reports from school now, though we did have a bad day Thursday :-(, he could stand on one leg, hop on one foot, etc.  So my logic is…keeping testing him on things he could not do before and see if he can do them now that he is on the machine.  My next big test…the Gower’s Maneuver!!!  He has always gotten up off the floor using the Gower’s Maneuver.  He even did this in Texas before the machine and I believe even on day 5 when they tested him before we left (I will have to see the actual video they did to confirm).  So last night I was thinking about what we have not tested him on and what he could not do prior to the machine and a light bulb went off to see how he gets off of the floor now from various positions.  For those of you who may not know, the Gower’s Maneuver is a common way boys with DMD get up from a sitting position.  I will do my best to describe it in words.  They first stick their bottom in the air, their knees usually go inward almost touching and they then use their hands to walk up their legs to help support them to stand from a sitting position.  I made 5 videos of Gabe getting up from various positions and he did not use the Gower’s Maneuver one time!  I used my wife’s iPhone as it is easier to upload that way so please forgive the video quality but he is definitely getting up different and faster.  We did one side by side his twin sister Addie and Gabe beat her!  The videos can be seen at http://www.hopeforgabe.org/photosvideos.html. We have a nice camcorder but unless I am doing something wrong, it takes forever to upload video from it and her iPhone only took seconds.  We will be investing in a Flip camera here soon I believe…but I digress.  I know there are many naysayers out there but the bottom line is I am documenting things my son COULD NOT DO BEFORE DECEMBER AND HE IS DOING THEM NOW.  Chalk it up to luck, coincidence, happenstance, or whatever you would like to call it but something positive is happening to Gabe and I know it, Traci knows it, his brothers know it, his sister knows it, his Aunt Steph knows it, and most importantly, Gabe knows it!  We see the actual changes.  I have not recorded this yet and it is my next project.  Tonight his Aunt Kelli and her 4 children came into town and are with us.  Gabe loves them all but he really loves his 3 year old cousin William.  Well William was upstairs and I decided I wanted to do another test of things Gabe has NEVER done.  So I brought Gabe downstairs with William still being upstairs.  I said “Gabe, William is upstairs watching you and I want to see how fast you can get up the stairs switching feet as you go.”  He was not happy at first but when he saw William he shot up the stairs like a bullet alternating feet incredibly fast!  Traci and Kelli (Traci’s sister) could not believe what they had just seen.  It was amazing!!!!  Of course like most amateur Big Foot, Yeti, or Elvis hunters I did not have the camera rolling so that is my next project but understand that he has never ever gone up our stairs alternating feet and running up them!  He always uses two feet on a step at a time.  Again, not sure what is going on but something is happening!  My Gaberoo, as I call him, has been an angel through all of this and his siblings have been so supportive as well as all of our friends, his teachers, the school, etc. The list goes on and on!  As an example, tonight after Turner’s (my 9 year old) basketball practice John Ryan wanted to say the prayer to end practice.  As I had my head bowed, I heard the words “…and please help cure Gabe Griffin of his disease and help his muscles.”  His grandfather told me he prays for Gabe at every dinner and every night before bed.  You can only imagine how I felt…then I thought to myself as I have so often…maybe this is Gabe’s purpose and maybe this is the “WHY?”.  To make other people, no matter how young or old, realize just exactly what is important in life.  I am shocked every practice and game when I see these kids say prayers for Gabe and I feel so blessed to be part of such a great community!  Tonight it was John Ryan…tomorrow it may be Cade or Connor or Chase or Anna or Christian or Andrew or Hayden or Grant or Jake or Ryan or Zane or Brady or Drew or Lauren or Douglas and the list goes on.  The bottom line is we are fighting a battle that has never been beaten and there is no such thing as too many prayers!  This machine continues to do things that I CANNOT explain but they are all positive results.  I believe this is a direct result of many thoughts and prayers so please keep ‘em comin’!!!  Gabe’s Dad

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Day 17 on the VECTTOR!

1/12/2011

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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
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Recap of Gabe's Corpus Christi trip and his VECTTOR Treatments

1/1/2011

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Saturday, January 1, 2011 11:25 AM, CST

I am not sure what to think!  I am as positive as they come (as many of you know), so I am very optimistic about what I am seeing so far.  To get you up to date…Tuesday, Gabe had a major ear ache and we told Dr. Rhodes about it.  He changed the protocol to address Gabe’s ear ache and within a day, Gabe quit complaining about the ear ache.  His ear is much better now but we have to fly back today…here we go again!  Hopefully, the machine will take care of it when we get home tonight.  You would not believe all the things this machine will supposedly help…it’s really almost too good to be true.  But maybe sometimes things really are that good!  We were supposed to do the DMD protocol all week but it had to be tweaked again on Wednesday b/c Gabe ended up with a cough…not sure where it came from but it was definitely croupy.  All illnesses must be addressed first as they create stress on the body.  So once the illness is treated and gone, the stress to the body is gone and then the DMD protocols can be administered.  Despite the cough, he continues to have major energy, run fast, and continues to walk up steps one leg at a time instead of two feet on each step.  The doctor videotaped him before and after 5 days of treatment, and although much appeared to be the same, we did notice a couple of things that improved.  His balance was better when standing on one foot.  He didn’t reach for the wall this time!  He also hopped on one foot which he could not do on Monday!  He is super fast but seemed faster on Friday (will need to see the videos side by side to be sure) and continues to karate chop everything in his path (like a Power Ranger)!!  So watch out Birmingham and kids in his class (sorry).  As a parent we try to stay grounded but even Traci (conservative) is beginning to become more positive.  And to be honest, it doesn’t matter how little progress he makes.  Forward is forward and we just want to lay our heads down at night knowing we did everything we could.

I also wanted to share an incredible story in which Gabe has touched more lives.  We were at the Texas State Aquarium and were enjoying the dolphin show.  When it was over, I asked one of the trainers if they had anything for special needs children to get up close and personal with the dolphins.  She said they had something called Dolphins on Deck which cost $99 but happens 15 minutes before each show.  Seeing how we had just gone to the last show, that was not an option for us.  She looked at Gabe and I could tell she was curious as to what was wrong with him as he looks normal.  I told her what was wrong and I could tell she was touched by it.  Traci, Gabe, and I walked on to different areas of the aquarium.  Well guess what…they came and found us!  They asked us to step outside for a second so they could talk to us.  I thought we were in trouble!  They said they wanted us to be back at the dolphin tank by 3:30 and they would call Gabe down to do some things with the dolphins. Things like hand signals, feeding them, pictures with them…awesome right?!  Well guess what…there was no show…it was solely for Gabe!!!  They allowed Gabe to feed the dolphins, signal to the dolphins, give toys to the dolphins, and much more!  It was incredible!  Traci and I were so amazed by this generous offer!  It did not stop there!!!!  They set up a behind the scenes tour for Gabe so he could see everything about the aquarium.  Gabe was able to feed sea horses, pet a turtle, see the sharks being fed, feed the sea turtles, hold a baby alligator, hold a crab with its shell, see many hawks up close, hold and pet an anteater, and everything that happens behind the doors.  This is all in addition to his dolphin experience!  These folks were so touched by Gabe that they made this happen!  We are blown away by their generosity and all I can say is the Texas State Aquarium RULES!!! See pictures at http://www.hopeforgabe.org/photosvideos.html (evetually when I can .

Another great thing happened on our trip…Gabe met a new little friend and we connected with another DMD family.  The little boy’s name is Zubin Sethi and he turned 6 years old a couple of months ago.  They became instant friends and we hung out together with he and his mother in the pool, went to the USS Lexington together, and just exchanged stories, advice, tears, and hugs!  It was so great to know we were not alone b/c it feels like it a lot!  We’ll miss you Zubin and Tanmeet, but we will keep in touch as we go on this journey of hope together!

Here is hoping 2011 is a GREAT year for everyone!  Thanks for following our journey and we could not do it without you!  Gabe’s Dad
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