PLEASE READ THIS ENTIRE POST...Not sure where to begin...since the last time we posted, life has continued and in many cases that stinks! That means Gabe is older...which means the disease has progressed one more year and that is one more year that has passed with Gabe. We have great memories of him winning the Cub Scout Derby Car race for Pack 007 and 3rd at the district race (the Caldarellos rule!)...WHOHOOOO! But the harsh reality of the disease is that Gabe is one year older (7), one year weaker, one more year mature which means asking questions difficult to answer, one more year of Traci and I asking “WHY”, and one year more praying with every thing we are that God provides an answer! Don’t get me wrong, there have been many unbelievable things that have happen over the last year that are positive and here are a few. The Red Shamrock has flourished and the ceiling continues to be covered with money for the Hope for Gabe Foundation! Gravlee Fitness in Mt. Laurel put on a run for our foundation and raised a significant amount of money during our St. Patrick’s Day Festival. Spain Park baseball once again supported H4G with a “Gabe Day” versus Mt. Brook in baseball at Spain Park. Many children held birthdays and instead of gifts decided to do “Gifts for Gabe” where the money for gifts was donated for Gabe. The American Two - All Star Team donated the remaining balance of their baseball fund to H4G (thanks to Coach Tolbert). Ben Cohen and his BCAA athletes were involved in fundraising and a T-Shirt campaign at their respective schools in the Birmingham area. The Chelsea 6th Grade Competitive football team (thanks to Coach Johnny Howard) had shirts made for this season that say H4G on the back. The Shelby Surge and Double Oak Mountain Travel Ball baseball teams wore H4G on their jerseys/hat/batting helmets (thanks to Coach Will Griffin and Coach Eric Vice). The Oak Mountain National All Star team wore H4G stickers on their batting helmets (thanks to Coach Craig Yancey). The Oak Mountain/Heardmont Texas Rangers 8 year old team wore H4G shirts instead of jerseys in a game to raise awareness (thanks to Coach John Chitwood). Ryan Lochte (Olympic Gold Medal Swimmer) wore the H4G shirt while in LA. AJ McCarron (Bama QB) wore the H4G wristband and T-shirt to spread awareness during the Alabama vs. Auburn week in 2011. Nashville song writer and singer Wade Quick wore the H4G shirt while performing in Nashville. Taylor Arnette, Entertainment Tonight Teen Correspondent, wore the H4G band, T-shirt, and did a Public Service Address for H4G!! Andy Johnson, friend of H4G, utilized many social media avenues to raise over $600 for H4G (all the money is on the ceiling at The Red Shamrock)! Tom Royster and the Chelsea Basketball League raised over $1,300 for H4G (which some of the money is on the ceiling at The Red Shamrock)! There are many other positive things that have taken place and I am sure I have missed a few...But the harsh reality is Gabe is one year older and the disease has progressed one year further. September 21 marks the one year anniversary of us stopping the use of steroids on Gabe. Each day that goes by Traci and I discuss steroids...I am not sure what the right answer is...I just know the side effects are horrible and the year that Gabe was on them he was not our little Gabey! Since being off steroids, he has learned more in school and faster, his behavior has been unbelievable, he has become a loving little boy, he has grown, he no longer has hair on his back, but he has gotten weaker. However, we believe because of VECTTOR (the electrical stem machine Gabe is on every night) Gabe is not near as weak as he could be. We believe Gabe on VECTTOR alone versus Gabe on nothing is stronger and continues to improve. We are excited to be on the verge of funding a 12 month clinical trial for VECTTOR in which Gabe WILL NOT participate as he cannot per our foundation by-laws. I am anxious to get this under way and to see the results! Gabe’s siblings continue to be very active in basketball, baseball, cheerleading, gymnastics, etc. On an awesome note, Gabe is still busy just being a little boy who loves video games and is unbelievable at them! Though the questions get tougher his smile makes me forget just how devastating this disease is...for a second! Then reality hits again. I mentioned Andy Johnson previously...Andy is someone who heard of Gabe and his fight through our Pub, The Red Shamrock. Andy has become a man on a mission and for that we are forever grateful! He came up with an idea to raise money as he has done in the past for other causes. Once he heard about Gabe he abandoned the other causes to focus his attention on Duchenne! And boy are we lucky! Andy believes that through the use of social media and folks like you we can raise $500,000 to fight Duchenne and for H4G!!! Time is ticking and it is now time to get to serious work! He has developed a site at: http://www.indiegogo.com/h4g?a=1336799 to raise awareness and money to help beat what has been an unbeatable disease. I met Andy several months ago and he said what did it for him was Gabe’s picture (above) where he is holding the sign that simply says “Thanks for giving me hope! I will end Duchenne!” It continues to amaze me what impact Gabe has on total strangers. I hope this continues and I hope that each of you will spread the word and share the above link with EVERYONE you know. Let’s help Gabe...because together, I believe WE CAN end Duchenne! Gabe’s Daddy
Friday, November 18, 2011 11:32 PM, CST
It has been a very long time since my last post but a bunch of good things have been happening! We have had many fundraisers like Grillin’ for Gabe, Birmingham Southern College softball tournament, the hot wheels video fundraiser that is still bringing in money!!! BTW it can be seen at and has been seen over 2.3 million times…wow! Not to mention all of the kids that have elected to do Gifts for Gabe in lieu of birthday presents…there are so many incredible folks in this world and so many of them are children! Another exciting note is that me and a partner wanted to figure out a way to spread awareness even further so we decided to open up an Irish Sports Pub and Grill called The Red Shamrock at the Towne of Mt. Laurel in Birmingham (it is like a Sea Side type of community without the sea). We wanted to use many aspects of this venture to spread awareness so as an example, the color red in the name comes from Gabe’s hair. We are getting very creative in spreading awareness and welcome other ideas as well. As another example, there will be dollar bills on the ceiling and actually, though we are not open yet, there is several hundred dollars up there already from folks stopping by to say hello and every person has heard about Gabe’s journey. Once a year we will throw a huge party, bring the money down from the ceiling, count it, and donate it to the Hope for Gabe foundation!!! How cool is that?! Right now there are ones, fives, tens, and even twenty dollar bills on the ceiling with notes written on them like “you go Gabe”, “good luck Gabe”, “God is with you Gabe”, “Cahaba Valley Fire Department (CVFD) 4 Gabe”, etc.!
We are going to attempt another creative way to spread awareness by utilizing the checks at the end of the meals. When folks get their ticket at the end of their meal the ticket will HOPEFULLY say total, tax, tip, and GABE with a line for donations. Our hope is people will start asking “what is the GABE line on my ticket?” That is when the server will give them a short laminated version about Gabe’s journey and the disease. No one has to donate but at least that is one more person that knows about the disease! We are uncertain about this right now as we are not sure our software will allow us to do this but we are investigating. I still think it is a cool idea! We are shooting for a December 1, 2011 open date so if you are around the area, stop by and say hello! Who knows, you may even get to go for a ride in the “Paddy Wagon” some day. Things have been great or I guess as great as can be when your child is battling a terminal disease. You have to make the best of it and we are trying our best to do just that.
As many of you know, Gabe had his annual Duchenne clinic check up recently at Children’s Hospital here at UAB. I know many folks are curious as I have received messages and text asking about the results especially since Gabe has been on VECTTOR now since December 27th and is no longer on steroids. We started weaning him off of the steroids in July with his last small dose occurring on September 22. So to recap, last year he was ONLY on steroids when we had him tested and yesterday the only thing he is doing is VECTTOR with no steroids. He does however remain on the same supplements from last year as an additional fyi so nothing has changed with his supplements. I won’t keep you in suspense any more and here are the results:
Hands free Could not do it 2.3 Seconds
From seated 1.6 Seconds 1.1 Seconds
30 foot run 4.0 Seconds 3.8 Seconds
Stair Climbing 1.5 Seconds 1.2 Seconds
Obviously to me these statistics speak for themselves in my opinion. The doctor was impressed but not so impressed that he would attribute it all to the VECTTOR machine. However, I did put him on the spot and I said “now if we go another year without steroids and when Gabe is tested again, if his numbers are better yet again then we will have to attribute it to the machine right?” His answer – “yes”. So doc I will hold you to it!
On an ending note, many people do incredible things for us all the time but this is a company that is stepping up again for our foundation. If you recall a while back there was a company that sent us on a “Make a Wish” type of trip to the Georgia Aquarium and it was unbelievable with a behind the scenes tour where Gabe actually got to touch and feed the animals. Well they are at it again and I would like to ask each of you to support their company.
Cheeriodicals, from even before its first day in business, has worked with the Hope For Gabe Foundation to raise awareness of Duchenne and more specifically to share Gabe's story. Gabe is prominently pictured on Cheeriodical's web site, www.cheeriodicals.com, to detail his story, his fight for a cure and of course for that perfect head of hair that makes every site visitor smile. Cheeriodicals is partnering again with our foundation as we approach the Holidays by giving back $3 from each Cheeriodical box sold between now and Christmas. Simply enter the code "H4G001" in the promo code section at checkout. Cheeriodicals make perfectly unique gifts for all occasions including: Christmas, year-end employee/client gifts, new baby, new bride, get well, thinking of you and more. Thanks to all of you for supporting the Hope For Gabe Foundation by choosing Cheeriodicals and please feel free to forward this message to your FB friends so we can exponentially grow this fundraising effort.
Thanks for your thoughts, prayers, support and most importantly thank you for the interest in Gabe’s journey! Without you we do not have HOPE!! Gabe’s Daddy
Friday, August 19, 2011 12:53 AM, CDT
Quick Post -
Many many folks have asked to see the before and after video of Gabe on VECTTOR. Dr. Rhodes put togehter this video of Gabe which includes Gabe on Day 1 PRIOR to any VECTTOR treatment, Day 5 after VECTTOR treatment, 1 Month after VECTTOR treatment, and 7 Months after VECTTOR treatment. All we can say is WOW! Here is the video:
Tuesday, August 16, 2011 2:25 PM, CDT
I will be very short but this appears to be good news. I am trying to remain grounded as I know he can start to get weaker in the comng months.
As we are starting week 4 of Gabe's Deflazacort weaning, here is a video after week 2 of his progress. In this video are many different impressive things but to me 3 stand out. First is him running up the stairs. This is impressive as he does it a full 2 seconds faster than the video of him running up the stairs in January 2011 yet he is on a lesser dose of steroids. Second, he also gets up off of the ground from an Indian style position with no hand use at all! He has never been able to do that yet he does it here on a reduced amount of Deflazacort. Third is how high he jumps and he appears to jump higher than the previous time in January yet he is on a lower dose of steroids. The only thing that has remained constant is the use of supplements, Protandim, and VECTTOR. He will completely be off Deflazacort in 4 more weeks. I hope he doesn’t get weaker! You can watch the video below or here is the link to the video: http://www.youtube.com/watch?v=lCcLyl_rIKA
Your are my hero Gabe! Gabe's Daddy
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
Monday, May 16, 2011 10:55 PM, CDT
It is amazing to us what the Lord does for us and who he brings into our lives! Traci and I are finding that through every challenge we face along our journey, the Lord brings incredible people into our lives for different reasons! This has never been more obvious then this next story of unbelievable kindness, hopefulness, compassion, and genuine love for a little red head battling a terrible terminal disease! This all started a few years ago when Mary Martha and Gary Parisher got the word from dear friends of theirs who are now dear friends of ours as well. They were told that there dear friend’s child was believed to have Duchenne like Gabe. At the time none of them knew Gabe but learned about DMD extremely fast and like all of us, what they read about this disease floored them. Over the next several months they all believed this child had Duchenne! Can you imagine having a child and thinking they had a terminal disease for almost a year? They finally had a muscle biopsy done on their child (which is extremely painful) and the results…NOT DUCHENNE!!!! Thank the Lord! After this disease impacted their lives so much, they all decided they wanted to do something to make a difference with DMD. One day a board member (Karen Gilbert) was wearing an H4G shirt at school and Mary Martha saw the shirt and stopped her to ask what it was about. Karen shared the story and Mary Martha immediately wanted to be involved. As an attorney by trade, we were thrilled of the thought of having her involved with our foundation! However, it would not be her natural trade that created such incredible memories for our entire family and my sister. Mary Martha has recently launched a new business called Cheeriodicals. She and her husband immediately wanted Gabe to be the first recipient of a “Make-A-Wish” type of trip sponsored by her company. When they shared this information with us we were blown away!!!!! They decided on a few options and wanted us to decide. Our decision…The Georgia Aquarium with the Dolphin Tales Show, Deepo’s Undersea 3D Wondershow, and a behind the scenes SHARK tour!!! You cannot imagine the joy in our hearts when they offered us a trip like this. My children where so thrilled just to be staying at a hotel much less going to the aquarium! Gabe asked…”Daddy will we be able to watch a movie in the hotel room?” It always amazes me how their little minds work! “Yes we will watch some movies Gabe!” Needless to say, the Aquarium was unbelievable, the hotel SUITE they got us was HUGE with an adjoining room, and we went swimming in the indoor/outdoor pool which the kids did not want to get out of!!! These guys absolutely ROCK!
We would love for anyone reading this to sponsor Cheeriodicals as they are a start up and right out of the gate decided to do something for our family and especially Gabe! They could have waited until business had been up and running but literally offered us the trip within a week of being launched!!! I often mention that I am not sure of the “WHY” Gabe but gestures like this make me realize that Gabe is making such an impact even though he may not know what he is doing! I will end by saying Mary Martha and Gary Parisher are incredible people who are doing incredible things by making a difference! Though Gabe will remain on their web site, they will continue to make “wishes” happen for many other children in the community!
I ask that everyone reading this support them in their new endeavor and here is a little about their new company: Cheeriodicals is an online specialty gift company that offers a fresh alternative to traditional gifts. The company ships gift boxes filled with magazines and addicting specialty food items, both targeted to the recipient’s interests. These are feel-good gift boxes with magazines and many treats to choose from! Who wouldn’t want a stack of their favorite magazines and some great snacks to pass the time in the hospital? What guy wouldn’t love a surprise gift of college football ranking magazines? I would have loved for someone to have sent me a gift box full of decorating magazines and snacks as a housewarming gift when I first purchased my home. As a socially responsible company, Cheeriodicals is partnering with the Make-A-Wish Foundation to adopt “wishes” of children with life threatening illnesses. Cheeriodicals is the perfect gift for those in the hospital, brides to be, moms to be, to give as a birthday gift or for any special occasion. For more information about these great people and incredible company please visit www.cheeriodicals.com. Thank you for all you do and please help support Cheeriodicals! Gabe’s Daddy
Wednesday, March 23, 2011 10:11 AM, CDT
Before I get started with a special post, I wanted to let everyone know that Gabe is doing incredible on the machine! I posted on Facebook but I am posting the still picture of him jumping to the right here as well. You can see the entire videos at http://www.hopeforgabe.org/photosvideos.html of him jumping, balancing on one foot and hopping on one foot which he could not do prior to the VECTTOR! This is a long post but I have not posted in a while so please be understanding. There are two things I am going to post below and the first is a special project that Turner had to turn in at school. I am so proud of him but scared of what may be in the next paper he writes as he is starting to connect the dots with this horrible disease Duchenne! Here is verbatim what he turned in and it was an in class exercise so we did not know he did it until it came home laminated. Note the misspelled words as this is verbatim –
“Who Is Special To You?
Who is an important person in your life? My 5 year old brother named Gabe is an important person in my life. He is a very special boy because he was born with a disease called DMD (Duchenne Muscular Distrophy). He has red hair and was born May 13, 2005. Here are three reasons why he is special.
He was born with a terrible disease but he tries to be his best. It is hard to do a lot of things like listen to what his teachers and what mom and dad say. I love him so much though. He is a very nice and pleasant boy, however it is hard to control himself and listen to instructions. Everybody loves him, like Andrew and me because he is as delicate as a vase.
Second, he tries to be like me and play sports like me and be able to run fast but his weak muscles won’t allow him to. He played baseball and soccer but he got tired during the beginning of the game or practice. He loves to play with his friends but he can’t do a lot of things they do. It is a tough life for him. He has lots of ups and downs.
Lastly, he is so special because when people’s birthdays come up, on their invitations they say “Instead of giving presents, bring money and I will donate it to Gabe!” So far, they have raised at least $800! That is amazing!
I hope you know why I picked my little brother for this story. He is a very special little boy and it is hard to think he has weak muscles. He looks like a normal boy but he really has something wrong inside. I love him so much! Who is very special to you? By - Turner Griffin”
I can tell you it was impossible to read the above without crying! Little boys should not have to write about things like this! I know such is life but this disease impacts EVERYTHING in our life and it is now finding its way as a topic in Turner's schoolwork. I am sure other little boys wrote about an athlete, grandparent, parent, or older brother that they look up to but not Turner. He chose to write about his 5 year old younger brother who has made a tremendous impact on Turner because of his battle with a terminal disease! I am so proud of Turner and though he does not know all of the details of the journey ahead of Gabe, he simply just knows he is special and he loves him so much! I know it won’t be long before the questions become way more difficult but I must admit…WOW! Gabe just has that effect on people. Nothing is more evident than the next story in which Gabe touched a group of 10 year old boys of a basketball league in such a way that they got really creative and had a fundraiser!
The Oak Mountain Raptors are a group of 24 4th graders from the Oak Mountain school system developing basketball skills by playing together in competitive basketball leagues in Birmingham. When the directors of the program, (Kris and Angela Dunn) were looking for a service project to remind the boys involved that it wasn't all about sports, they knew the organization they were going to focus on - Hope For Gabe.
Here's what they did to get involved:
· The Raptors set up a fundraiser that was pledged-based, with the kids/players soliciting pledges from friends, relatives and family members for every point the Raptors scored collectively in the last week of their season. Their teams played 4 games that weekend, and they gave guidance to those that pledged with a target of 80 points (each team scoring an average of 20 points). That made the math on the targeted pledge $10, and they also allowed people to simply pledge that amount or any other amount they'd like to as well.
· The Raptors did an educational meeting where Traci and I went to talk to the kids about Gabe's condition, what the disease does to little boys, and why we need a cure.
· At the same meeting, the Raptors coaches told the boys and parents what they wanted them to do - which is make calls (the kids, not the parents) to the people they know and tell them about our fundraiser - who they were playing for, why it's important, and then ask them for a pledge based on the number of points they scored that weekend. The Raptors asked the parents to help the kids build a list of people to call, to email, etc., and asked them to dial the numbers for them and say hi first, but the goal was to have the kids to make the actual request. That's all part of them doing the service mission and understanding what it takes to ask people to get involved through a pledge, describing the mission of the drive, understanding compassion for others, etc.
· The Raptors provided a flyer describing what they were doing to follow up via email, a pledge sheet and a brief script the kids could use when they got on the phone with someone.
· The Raptors target per kid: At least five $10 pledges for a total of $50 per kid, which would allow them to make a donation of over $1,000 to Hope for Gabe.
How did they do? We joined the Raptors program at the end of season awards ceremony, at which time the Raptors coaches put the final number up for all to see (including the kids that knew the goal was $1,000) and delivered the following amount to Hope For Gabe......
Over $3,600!!! Unbelievable!!!
If you're looking for a service project to teach some lessons in life and also raise money for a great national cause with a local connection, the Dunns and the Raptors program highly recommend doing a similar drive for Hope For Gabe. Contact us at the Hope For Gabe foundation and we'll put you in touch with the Dunns who are happy to provide all the pledge drive materials they used (email content, pledge sheet, script for the kids) so you don't have to start from scratch.
The Raptors program won a title and finished second in another league this year. It's safe to say their involvement with H4G will be as memorable to the kids and the parents as any game or trophy! You guys absolutely rock!!! Gabe is so fortunate to be in this community and to have all these folks working together to make a difference with our foundation. It is evident more than ever that Gabe impacts lives even though he is not trying to! Gabe, you are my hero! Gabe’s Daddy
Thursday, March 03, 2011 11:27 PM CST
We often hear that “time is of the essence” and I understand that means SO much when it comes to our boys who have Duchenne but I did not realize that meant Gabe would be asking questions at age 5 that are very difficult to answer and our answers would play an important part along this journey! He recently was talking about our cat Kelsey that passed away last year. Gabe looked at Traci with the most inquisitive look and asked “Mommy, am I going to Heaven first?!” Now I ask you this…I know children ask lots of difficult questions, but having three other children we have never encountered one like this. Where did this come from??? Traci did a great job as usual and said “We will all go to Heaven Gabe, hopefully when we’re all real old.” Gabe then said “I want to be in Heaven with God. Will I be in heaven when I am 8 years old?” Traci said “No…you will be in Heaven when you are 100!” Gabe smiled and said “OK!” What 5 year old asks this question??!! Needless to say Traci was holding back the tears when she answered him and Cooper was standing their listening to it all which did not make it any easier! The questions are starting to get more difficult and more frequent. Last week when he was being hooked up for one of his treatments he asked “Mommy, when can I stop my treatments?” Traci stated “well the machine is making your muscles feel better so we need to keep using the machine!” Gabe then looked at her and asked “Mommy when will I be like Turner and be able to play football?” Traci was not sure how to answer this comment but did a great job deflecting the answer. It has been a tough week of questions and it is only going to get tougher but I want to end on a positive note.
The VECTTOR treatments continue to go well and Gabe is now asking to get on the machine right after dinner which is an incredible surprise. He gets done eating and says, “It’s time for the machine…” and then he runs into the bedroom and jumps on the bed for his 80 minute treatment! I often write about the physical improvements but just as important are the cognitive improvements! It’s almost impossible to say that Gabe would have naturally progressed to the point he is now if we hadn’t taken that trip to Texas. He was starting to show signs of improving in all areas, but I have to believe this treatment has only accelerated his progress. I think he’s able to think and talk more clearly, has more energy, more coordination, etc. I have written in the past about Gabe and how he is not turning as many cards like he was in school before the machine (see previous posts), but I want to tell you about his newest achievement. Gabe was starting to read some single three letter words but was having trouble putting sounds together before December 27 and day one of VECTTOR. Traci had a meeting with Gabe’s teacher last week and she told her that she thought he was ready to move on to first grade b/c of how well he was reading. What? Excuse me? Gabe Griffin??!! We decided to put him to the test. We got out our “Dick and Jane” book, just like we did with all of our other children, to see if he could read. Not only can he read…BUT HE READ 5 CHAPTERS WITHOUT MISSING A BEAT!!! 48 pages!!!! We could not believe it!!! Since that day his reading continues to improve. His teacher said send him on to 1st grade with Addie! What great news! This was as exciting as the day he WILL graduate from college! As additional insight to his cognitive improvements after being on VECTTOR, his writing skills seem to have improved tremendously since being on VECTTOR. He is now copying words from the board to his paper whereas before he was just tracing letters. One of the benefits of having Addie and Gabe in the same class is we can compare their school work each day. Some of his worksheets now look as good as hers!
At the end of the day, Gabe is constantly improving in many areas and as his parents who are with him everyday, it is obvious what the improvements are monthly. I’m sure the “normal” child would have naturally progressed like this, but knowing the delays Gabe has, it’s amazing to see how fast he is catching up to his peers! Gabe – you are my hero and there is no way I could sit there for 80 minutes taped up like a mummy with electrodes on my upper and lower body and never complain…yet you don’t complain! You are teaching me so much and you are only 5! Love you all my heart!!
Friday, February 11, 2011 11:24 PM, CST DAY 46 on VECTTOR
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
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