Its that time again folks! September is upon us which means a couple of things in this household.
1. Carter's Birthday! This year he will turn 18!
2. CMT AWARENESS MONTH!!!!!
So, what are we doing this year to raise awareness? Well, we wanted to do something different, some thing that could possibly make a big impact. We have done the birthday wish and he has done races to raise awareness, so now its time to try something new. Carter and I thought since he is going into the medical field and taking medical courses this year, what better way to raise awareness than at the source. The source being a medical professional.
We have learned not just through our experience, but from others that a majority of doctors and nurses have no idea what CMT is. Many of them have never heard of it, let alone seen it. And if they have.....they still don't know enough about it. What better way to raise awareness than in the medical field? Where it all starts. The field that needs to know about it in order to properly diagnose. The field that needs to know about it to help research.
Let's start a GRASS ROOTS MOVEMENT, A GRASS ROOTS AWARENESS!
We are starting small but hopefully we will be able grow!
What are we doing?
Carter will be taking into this Practicum Health Clinical Rotation class a brochure on CMT and a poster from CMTA. He is going to talk to his teacher, who is a surgeon, about CMT. He would like to present to the class and show them what CMT looks like. Then when he gets into his clinical rotation hospital he will talk to the docs he comes in contact with about CMT.
We are going to our local pediatrician offices to hang posters and pass out brochures and talk to them about what CMT is and what the signs are. Our pediatrician is on board with this, so I know she will help raise awareness! Our dentist, our eye doc, our physical therapist, any doctor in our area that will listen.
Carter and I are challenging you to do the same in your area. Talk to any and all medical professionals you come in contact with about Charcot Marie Tooth. Give them a pamphlet on it, make a flyer, give them bracelets and tell them the signs and where to find more info on it.
MAKE A DIFFERENCE!
START A MOVEMENT-A MOVEMENT TO FIND A CURE ONE STEP AT A TIME!
Until next time....................Speak up and make a difference!
Momma Hayes & Carter Hayes ~ "Stay Strong, Believe"
Sunday, September 8, 2013
Tuesday, September 3, 2013
UT Southwestern Update
Just wanted to give an update on our visit to UT Southwestern last month. Carter and I arrived at UT Southwestern on August 6th bright and early at 7 a.m. We finally got to meet Dr. Nations and her wonderful staff. I believe we have found a group of Docs who not only know about CMT but actually care and have a great bedside manner. So, for all my Dallas or Texas peeps go check out Dr. Sharon Nations or Dr. Trevedi at UT Southwestern in Dallas.
We of course had to go through all the standard questions and a complete physical check up all over again to compare to what Scottish Rite had. Afterwards we were sent to get an EMG and a NCV done. Real quick for those of you who are new I will explain what a EMG and NCV are. EMG stands for electromyography which measure the electrical activity going through the muscle when it is at rest and when it contracts. A NCV stands for nerve conduction velocity which tests to see how fast electrical signals travel through a nerve. It is not fun..... Carter was not to happy about this. He was already in pain just from the exam and showing them how he walks and so forth. But as usual, he didn't complain and made it through it. Dr. Trivedi gave the EMG and NCV, so we were able to meet her as well and LOVED her. Mom on the other hand had a harder time. Now matter how you slice it, it just does not get any easier seeing your child go through these tests.
After all the testing we met with both Dr. Nations and Dr. Trivedi and they both concluded that he has CMT most likely CMT 2, just like what Scottish Rite said. They said he has progressed since the last test in 2010. Which I already knew to be honest. Since he is in a lot more pain and can't sleep at night due to the pain, they prescribed him Gabapentin. I was very apprehensive at first to give him a pain pill but they assured me it was non habit forming and has little side effects. Carter has been on it for almost a month now and so far so good. It has really helped him get a more restful night of sleep. The only downside is the fatigue it causes, toppled with the fatigue from just having CMT makes for one tired Carter!
Overall, the visit was great and we were very happy with her plan. We are starting physical therapy again to see if there is anyway to help lengthen the Achilles without surgery. She is not optimistic about it, so we are also looking for an Orthopedic Surgeon to evaluate his situation. If anyone knows of one in the Dallas area send me a message please!
Until next time......................"Stay Strong, Believe"
Momma Hayes over and out!
We of course had to go through all the standard questions and a complete physical check up all over again to compare to what Scottish Rite had. Afterwards we were sent to get an EMG and a NCV done. Real quick for those of you who are new I will explain what a EMG and NCV are. EMG stands for electromyography which measure the electrical activity going through the muscle when it is at rest and when it contracts. A NCV stands for nerve conduction velocity which tests to see how fast electrical signals travel through a nerve. It is not fun..... Carter was not to happy about this. He was already in pain just from the exam and showing them how he walks and so forth. But as usual, he didn't complain and made it through it. Dr. Trivedi gave the EMG and NCV, so we were able to meet her as well and LOVED her. Mom on the other hand had a harder time. Now matter how you slice it, it just does not get any easier seeing your child go through these tests.
After all the testing we met with both Dr. Nations and Dr. Trivedi and they both concluded that he has CMT most likely CMT 2, just like what Scottish Rite said. They said he has progressed since the last test in 2010. Which I already knew to be honest. Since he is in a lot more pain and can't sleep at night due to the pain, they prescribed him Gabapentin. I was very apprehensive at first to give him a pain pill but they assured me it was non habit forming and has little side effects. Carter has been on it for almost a month now and so far so good. It has really helped him get a more restful night of sleep. The only downside is the fatigue it causes, toppled with the fatigue from just having CMT makes for one tired Carter!
Overall, the visit was great and we were very happy with her plan. We are starting physical therapy again to see if there is anyway to help lengthen the Achilles without surgery. She is not optimistic about it, so we are also looking for an Orthopedic Surgeon to evaluate his situation. If anyone knows of one in the Dallas area send me a message please!
Until next time......................"Stay Strong, Believe"
Momma Hayes over and out!
Wednesday, July 31, 2013
For nothing is impossible with GOD- Luke 1:37
First let me start out by say a gigantic CONGRATULATIONS to Carter! He has been accepted to the UNIVERSITY OF KANSAS! This was his number 1 choice. He did really like Arkansas but after he got the acceptance from KU there was no doubt where he was going. He said I just know this is where I am supposed to be. I am so proud of him and super excited about his journey.
The one thing we have all learned in this journey of ours is nothing is impossible with God! If you don't believe that I am telling ya, you really should. We are a perfect example of it. Two of my boys were diagnosed with CMT within a month of each other and then 7 months later boom, my mom diagnosed with stage 4 carcinoid cancer. Did any of us give up? NO, not for a minute, because when you have faith you know without a doubt HE will get you through even your darkest moments. Don't get me wrong there were times when I was struggling with it all but I always came around. He did get us through just look at what has happened, Carter is now accepted into his dream school, Zach is getting ready to play football and my mom has made it past the 1 year mark and plugging along.
To be honest when Carter was diagnosed with CMT and his dreams were shattered I really did not know what to expect. I knew he was strong and faithful, much more than myself at that time, but I really worried about his future. I saw how he struggled with his new diagnosis and school. His sophomore year really took a toll on him but he never lost faith and never gave up. He stayed strong and persevered. His dedication and hard work paid off! He truly deserves his acceptance letters and any school is lucky to have him! But he is now officially a JAYHAWK!!!
For all you CMTer's out there who are still in high school or middle school DO NOT GIVE UP!!!! You can achieve if you believe. You will have to work hard, push through pain and sometimes fall but it will all be worth it. Any school would be lucky to have any of you, each of you have something special to offer. Just remember..........................."STAY STRONG, BELIEVE"
ROCK CHALK JAYHAWK-
MOMMA HAYES OR MOMMA JAYHAWK? :)
The one thing we have all learned in this journey of ours is nothing is impossible with God! If you don't believe that I am telling ya, you really should. We are a perfect example of it. Two of my boys were diagnosed with CMT within a month of each other and then 7 months later boom, my mom diagnosed with stage 4 carcinoid cancer. Did any of us give up? NO, not for a minute, because when you have faith you know without a doubt HE will get you through even your darkest moments. Don't get me wrong there were times when I was struggling with it all but I always came around. He did get us through just look at what has happened, Carter is now accepted into his dream school, Zach is getting ready to play football and my mom has made it past the 1 year mark and plugging along.
To be honest when Carter was diagnosed with CMT and his dreams were shattered I really did not know what to expect. I knew he was strong and faithful, much more than myself at that time, but I really worried about his future. I saw how he struggled with his new diagnosis and school. His sophomore year really took a toll on him but he never lost faith and never gave up. He stayed strong and persevered. His dedication and hard work paid off! He truly deserves his acceptance letters and any school is lucky to have him! But he is now officially a JAYHAWK!!!
For all you CMTer's out there who are still in high school or middle school DO NOT GIVE UP!!!! You can achieve if you believe. You will have to work hard, push through pain and sometimes fall but it will all be worth it. Any school would be lucky to have any of you, each of you have something special to offer. Just remember..........................."STAY STRONG, BELIEVE"
ROCK CHALK JAYHAWK-
MOMMA HAYES OR MOMMA JAYHAWK? :)
Saturday, July 6, 2013
Trust in the LORD with ALL your heart!
The past couple of weeks I have had some challenges appear and some decisions to make. In fact, as I am writing this I am dealing with one of those challenges now. The challenge of putting the words down and making them real. The words "I will not be able to ever go into the military." I now know this will never happen. See, a part of me always dreamt of it still happening, so I really held onto the thought in the back of my mind. I know, I know it sounds nuts with my CMT, but I thought maybe if I get the surgery they'll let me in. Well, now I know they will not. This all started when my mom received a call from a Navy Recruiter last week. Instead of saying he's not interested anymore, she said she just had to know without a doubt that I could not be in the military. She wanted to know once and for all if I could join or not. So she could help me let it go once and for all.
She told the guy everything that had happened, explained CMT, possible surgery, just everything! She laid it all out so there would be no misconceptions on any ones part. He of course had never heard of Charcot Marie Tooth disease and of course assumed it had to do with the teeth! Ugh! Long story short he told her there was a 95% chance that I would not pass the physical even after surgery. Plus, because it is a progressive disease with no cure that alone would most likely disqualify me.
Which brings me to the conversation of were my mom told me what the Navy Recruiter said and me coming to the final conclusion that the military is not in my future. It is NOT what HE has planned for me. Trust in the LORD with all your heart! Now I am moving forward completely and letting it finally go. Challenge number 1 completed!
Trust in the LORD with ALL your heart. Every time I hit the submit button on a college application I say " It's all in HIS hands". In fact, when I was filling out an application the other day, I realized the school was not for me. I was looking at this school because of someone else, not for me. I made the decision not to apply and I feel really good about it. I know HE will lead me to the right school for me and on the correct path for my future. Decision made!
My second challenge and decision are hand in hand. Due to pain in my legs lately I have not been able to run with the Cross Country team as much as I would like. I have had to cut it back to one or two days and sometimes not at all. So this has set me back in the running portion of my tri training. I have come to realize that there are just going to be days when I just have to rest. Then when I finally started to feel better what happens? I go out with the CC guys for an all out air soft war game and get poison ivy. Oh yeah! Not just a little I am talking major! It just sucks! I have it really bad in between my fingers on my right hand. Thank GOD I am left handed. After 5 days of pure pain and itching I went to the Dr. to get medicine since the calamine lotion and other stuff just wasn't cutting it. Now I am at least able to sleep at night. Challenge & decision completed.
Today my swim coach kicked my #$#! He has been out of town on vaca and I have been busy visiting colleges, so this is the first time in 3 weeks or so that I have had training. I was supposed to train while he was gone but between the pain in my legs and college visits I just didn't swim. So once again I paid the price. Mental note to self don't ever take swimming lightly and don't ever underestimate the power of Coach Will!
Some days are harder than others and you just have to remember to stay strong and believe. You will have bad days when your body just won't let you do what you want but DO NOT beat yourself up about it! Sometimes dreams are squashed but then new ones are created. Sometimes you feel like your peddling up hill the whole day but TRUST IN THE LORD WITH ALL YOUR HEART and the downward incline will happen.
Until Next Time............I think you all know what I am going to say......
Carter
"Stay Strong, Believe"
p.s. I leave for Arkansas next week with my mom and NANA! Catch ya all on the flip side!
She told the guy everything that had happened, explained CMT, possible surgery, just everything! She laid it all out so there would be no misconceptions on any ones part. He of course had never heard of Charcot Marie Tooth disease and of course assumed it had to do with the teeth! Ugh! Long story short he told her there was a 95% chance that I would not pass the physical even after surgery. Plus, because it is a progressive disease with no cure that alone would most likely disqualify me.
Which brings me to the conversation of were my mom told me what the Navy Recruiter said and me coming to the final conclusion that the military is not in my future. It is NOT what HE has planned for me. Trust in the LORD with all your heart! Now I am moving forward completely and letting it finally go. Challenge number 1 completed!
Trust in the LORD with ALL your heart. Every time I hit the submit button on a college application I say " It's all in HIS hands". In fact, when I was filling out an application the other day, I realized the school was not for me. I was looking at this school because of someone else, not for me. I made the decision not to apply and I feel really good about it. I know HE will lead me to the right school for me and on the correct path for my future. Decision made!
My second challenge and decision are hand in hand. Due to pain in my legs lately I have not been able to run with the Cross Country team as much as I would like. I have had to cut it back to one or two days and sometimes not at all. So this has set me back in the running portion of my tri training. I have come to realize that there are just going to be days when I just have to rest. Then when I finally started to feel better what happens? I go out with the CC guys for an all out air soft war game and get poison ivy. Oh yeah! Not just a little I am talking major! It just sucks! I have it really bad in between my fingers on my right hand. Thank GOD I am left handed. After 5 days of pure pain and itching I went to the Dr. to get medicine since the calamine lotion and other stuff just wasn't cutting it. Now I am at least able to sleep at night. Challenge & decision completed.
Today my swim coach kicked my #$#! He has been out of town on vaca and I have been busy visiting colleges, so this is the first time in 3 weeks or so that I have had training. I was supposed to train while he was gone but between the pain in my legs and college visits I just didn't swim. So once again I paid the price. Mental note to self don't ever take swimming lightly and don't ever underestimate the power of Coach Will!
Some days are harder than others and you just have to remember to stay strong and believe. You will have bad days when your body just won't let you do what you want but DO NOT beat yourself up about it! Sometimes dreams are squashed but then new ones are created. Sometimes you feel like your peddling up hill the whole day but TRUST IN THE LORD WITH ALL YOUR HEART and the downward incline will happen.
Until Next Time............I think you all know what I am going to say......
Carter
"Stay Strong, Believe"
p.s. I leave for Arkansas next week with my mom and NANA! Catch ya all on the flip side!
Wednesday, June 26, 2013
Great News UT Southwestern will take Carter's CMT case! Whoot Whoot!
Let me first start off with some quick updates and then I will tell you about UT Southwestern! My mom was not able to make it down the week of June 17th. So we ended up not going to Arkansas but to Stephen F Austin since it is a lot closer. We had an amazing private tour of the Observatory! We were able to see the moon, Saturn, Venus and stars! The boys loved it and boy did they feel special. Last Friday we went on a tour of the campus and it is beautiful. Lots of trees! But, Carter has decided it is not a place for him. It is just not a good fit with the area, size and pre-med.
So now we are off to University of Arkansas on July 10th and 11th. My mom is coming down to tag along with us. She is super excited to go on a college visit with her oldest grandson. We have decided to Zach along with us, so it will be my mom, Carter, Zach and of course little ole me. Ayden is staying back with daddy and Ms. Holly(his pre-k teacher). We will let you all know how it goes at Arkansas. They have us scheduled for a full day tour and Carter gets to meet with the Pre-Med Department! Yeah!
Now for the great news! As many of you know we have struggled with finding a Dr. who knows and treats CMT. We did try Scottish Rite but the Dr. was not a good fit. So after lots of research and help from my CMT Facebook friends we found one! Yes, I said Facebook, who would have ever thought how connecting with fellow CMTers on Facebook would be such an incredible resource. Several CMT patients recommended looking into UT Southwestern's Neurology Department, specifically Dr. Sharon Nations and Dr. Jaya Trevedi. After much research, lots of paperwork and help from no other than Kim Bookout ( I owe her my next born child or something like that), I received a call saying they will take Carter's case! THANK THE LORD!
Our appointment is scheduled for August 6th and Carter will have another EMG that day to compare to his last one in 2011. I know he is not looking forward to that but I am anxious to see how much it has progressed. I am so thankful he was able to get in before school. He has been having a lot of pain lately and his Achilles heal is really bothering him too. I hate to see him in pain....He doesn't complain about it but I can tell when he is in pain. He is so strong and such a fighter! Wish I was more like him. LOL Anyway, anxious to see what her approach to CMT is. We would really like to have surgery, the braces just are not helping. We will see what she has to say and we will definitely keep you all informed.
Well gotta run! Carter has Bible class tonight and he has a flat tire! :( So I am dropping them off!
Until next time..................Shoot for the stars!
Momma Hayes
"Stay Strong, Believe" ~ Carter Hayes
So now we are off to University of Arkansas on July 10th and 11th. My mom is coming down to tag along with us. She is super excited to go on a college visit with her oldest grandson. We have decided to Zach along with us, so it will be my mom, Carter, Zach and of course little ole me. Ayden is staying back with daddy and Ms. Holly(his pre-k teacher). We will let you all know how it goes at Arkansas. They have us scheduled for a full day tour and Carter gets to meet with the Pre-Med Department! Yeah!
Now for the great news! As many of you know we have struggled with finding a Dr. who knows and treats CMT. We did try Scottish Rite but the Dr. was not a good fit. So after lots of research and help from my CMT Facebook friends we found one! Yes, I said Facebook, who would have ever thought how connecting with fellow CMTers on Facebook would be such an incredible resource. Several CMT patients recommended looking into UT Southwestern's Neurology Department, specifically Dr. Sharon Nations and Dr. Jaya Trevedi. After much research, lots of paperwork and help from no other than Kim Bookout ( I owe her my next born child or something like that), I received a call saying they will take Carter's case! THANK THE LORD!
Our appointment is scheduled for August 6th and Carter will have another EMG that day to compare to his last one in 2011. I know he is not looking forward to that but I am anxious to see how much it has progressed. I am so thankful he was able to get in before school. He has been having a lot of pain lately and his Achilles heal is really bothering him too. I hate to see him in pain....He doesn't complain about it but I can tell when he is in pain. He is so strong and such a fighter! Wish I was more like him. LOL Anyway, anxious to see what her approach to CMT is. We would really like to have surgery, the braces just are not helping. We will see what she has to say and we will definitely keep you all informed.
Well gotta run! Carter has Bible class tonight and he has a flat tire! :( So I am dropping them off!
Until next time..................Shoot for the stars!
Momma Hayes
"Stay Strong, Believe" ~ Carter Hayes
Monday, June 17, 2013
Summertime! Training,training, volunteering and college visits! OH YEAH!
So glad its summertime, get to hang with my friends, apply for college, train and train some more! At least that is what I thought I was going to do but when I was out with my friends one night I injured my knee. Its badly bruised and when I stand for long periods it really bothers me. Surprisingly, it doesn't feel so bad when I run. I am running with my Cross Country boys when I can but my schedule is pretty tight right now with my volunteering work, visiting colleges, college applications and other commitments.
As for my volunteering/internship, yes I am lucky that Kim is taking me under her wing and allowing me to shadow her this summer at her practice, Pediatric Health Partners. Its been a great experience and I am learning so much. I am there Monday and Friday's 8:30-5 and Tuesdays 8:30 to 1 p.m. I really like getting to see the kids and her staff is simply, THE BEST! I am really blessed to have them all in my life and grateful for their advice and mentoring. I will say the one thing I learned is....I need to find me some good shoes! My running shoes are not working so well for me. Standing on my feet all day is a challenge for me with my CMT, so needless to say I need to find a good pair of work shoes! My mom has done some research on what docs and nurses wear and a lot of them wear either Crocs or New Balance. So we will see, not a big Crocs fan just don't like the way they look, but if they are super comfy then maybe.
As for my training well lets just say between my injury, volunteering and college stuff I am behind. My swim coach has been on vaca for the last 2 weeks, so I have not had a hard core swim workout since he has left. I don't even want to think about how brutal my workout will be with him on the 24th when he gets back. Will, my swim coach, does not like it if I slack off while he is away. His idea of slacking off is swimming 5 days a week! Crazy! Anyway, I actually am looking forward to him coming back and whipping me into shape!
I am behind not just in swimming but in all my training. I am not making excuses but the heat is a killer. See here in Texas if you are not done with your workout by like 8 am you are going to roast like a marshmallow. I am not kidding by 9 or 10 you are usually in the high 80's and by noon your are definitely in the 90's. Then you add in the humidity and forget it! I have been choosing to run in the morning (when I can my feet have been a challenge) and sometimes I just have other commitments so I am not able to do either. I do however need to change this as I am way behind in my training.
This week I leave for Nacgodoches, Texas. I am headed there to take a look at Stephen F Austin State University. Then we might swing by Baylor University on our way home. Pretty excited about going to see both colleges actually. I am sure my mom would like it if I chose a school in Texas, so I will be close to home, but I just want to find the school that is a great fit for me. We will see what SFA is all about, not really sure about their pre-med program but that is what this tour is for right? Really looking forward to Thursday night when we get to see the Observatory at night! Since I want to major in Physics or Astronomy they are giving me a tour at night where we will be able to see the night starts. Did you know Stephen F Austin has the second largest Observatory in Texas and the Central Time Zone? Pretty cool. I'll let you all know how it goes and if I make it to Baylor.
Well gotta run lunch break is over! Time to go see the little kiddos at PHP.
Until Next Time.............................TRAIN, TRAIN AND HAVE FUN!
Carter
"Stay Strong, Believe"
As for my volunteering/internship, yes I am lucky that Kim is taking me under her wing and allowing me to shadow her this summer at her practice, Pediatric Health Partners. Its been a great experience and I am learning so much. I am there Monday and Friday's 8:30-5 and Tuesdays 8:30 to 1 p.m. I really like getting to see the kids and her staff is simply, THE BEST! I am really blessed to have them all in my life and grateful for their advice and mentoring. I will say the one thing I learned is....I need to find me some good shoes! My running shoes are not working so well for me. Standing on my feet all day is a challenge for me with my CMT, so needless to say I need to find a good pair of work shoes! My mom has done some research on what docs and nurses wear and a lot of them wear either Crocs or New Balance. So we will see, not a big Crocs fan just don't like the way they look, but if they are super comfy then maybe.
As for my training well lets just say between my injury, volunteering and college stuff I am behind. My swim coach has been on vaca for the last 2 weeks, so I have not had a hard core swim workout since he has left. I don't even want to think about how brutal my workout will be with him on the 24th when he gets back. Will, my swim coach, does not like it if I slack off while he is away. His idea of slacking off is swimming 5 days a week! Crazy! Anyway, I actually am looking forward to him coming back and whipping me into shape!
I am behind not just in swimming but in all my training. I am not making excuses but the heat is a killer. See here in Texas if you are not done with your workout by like 8 am you are going to roast like a marshmallow. I am not kidding by 9 or 10 you are usually in the high 80's and by noon your are definitely in the 90's. Then you add in the humidity and forget it! I have been choosing to run in the morning (when I can my feet have been a challenge) and sometimes I just have other commitments so I am not able to do either. I do however need to change this as I am way behind in my training.
This week I leave for Nacgodoches, Texas. I am headed there to take a look at Stephen F Austin State University. Then we might swing by Baylor University on our way home. Pretty excited about going to see both colleges actually. I am sure my mom would like it if I chose a school in Texas, so I will be close to home, but I just want to find the school that is a great fit for me. We will see what SFA is all about, not really sure about their pre-med program but that is what this tour is for right? Really looking forward to Thursday night when we get to see the Observatory at night! Since I want to major in Physics or Astronomy they are giving me a tour at night where we will be able to see the night starts. Did you know Stephen F Austin has the second largest Observatory in Texas and the Central Time Zone? Pretty cool. I'll let you all know how it goes and if I make it to Baylor.
Well gotta run lunch break is over! Time to go see the little kiddos at PHP.
Until Next Time.............................TRAIN, TRAIN AND HAVE FUN!
Carter
"Stay Strong, Believe"
Tuesday, May 28, 2013
I can't believe JUNIOR YEAR is almost over!
It is starting to hit me like a freight train, Carter will be leaving to go to college this time next year! To be honest it really started when Carter and I drove up to KU, University of Kansas, on May 2nd. Carter is looking at several colleges but he really does have a soft spot for KU now that we visited. It truly is beautiful up there and very hilly(which scares me with his CMT) shh don't tell him.:) BUT they have a great Med program, pharmacy program, full of traditions, cycling club (which we got to meet the president of) and they have a program that would help him if his CMT got real bad! Which really put my mind at ease.
Our KU admissions rep Jon did an outstanding job showing us around and really went the extra mile. He too was a pre-med student and actually knew about CMT!!!!! HUGE BONUS! He told us that they have a shuttle for students that break their leg or have a disability, were it will pick them up from their dorm and take them to their classes. Carter would give him/her his schedule and they would be there waiting for him and take him to his next destination! SUPER COOL! Plus they put in pathways all over campus that would allow him to get up the hill without using the stairs. Jon set it up so we did a campus tour, housing tour and he even drove us around campus and showed us downtown Lawrence. Overall, it was an amazing trip and we both fell in love with KU. I think I cried the whole time we were there! LOL I am such a baby when it comes to my baby.:)
Now we have 8 days left of the Junior year and we will be applying and visiting campuses all summer. Next stop is SFA (Stephen F Austin) which is here in Texas, no not in Austin, it is in Nacogdoches. It is about 4-4.5 hrs away so not too far from home. We will be visiting them the week of June 18th! We will let ya know how it goes! They too have a good pre-med program, cycling club and a really good physics and astronomy program. Carter wants to go to become a doctor, a general surgeon to be exact, so he is choosing physics as his major and astronomy as a possible minor. SFA has the second largest Observatory in Texas and the Central Time Zone! Pretty cool! Carter is really looking forward to the tour and he is very excited because his Nana will be taking him! Yep, my mom really wants to experience seeing her oldest grandson visit a college so she is flying in that week. Crazy cause she was just here on the week of May 7th, she came down before her visit to her oncologist in Louisiana. Anyway, we will see what he thinks of SFA.
Then we will be off to see the University of Arkansas. Which believe it or not is only 5-5.5 hours away. Not bad. They too have a great pre-med program, physics program and he knows people that go there and are looking to go there. So that would be nice. Plus they too have a cycling club and full of traditions too!
I know a lot of people think I am crazy for being so emotional and worrying but they don't have a child with a disease that has no cure and progresses. I know he will be fine cause that is just who he is. He doesn't give up, fights hard for what he wants and doesn't let his CMT get in the way. However, as a mom I worry about him being so far away from home and that his disease will progress. It has been pretty good but lately he is complaining more and more about his left leg. It is really tight and we have noticed that he is loosing muscle in his feet. Muscle atrophy in his feet and lower calf is progressing. Really hoping the stretches the physical therapist gave him and his leg braces will help. He is using the braces again and is able to wear them longer and longer as each day goes by. Praying they will help.
Of course do you think this is stopping him from planning his next triathlon? NO!!!! His swim coach is pushing him hard and he says it feels good in the pool, no pain. :) He wants to do one more tri this summer, we haven't found one yet that works into the schedule but I am sure he will find one.
We will keep you all posted on the college journey. Any advice from fellow CMTers?
Until Next Time..................Cherish the moments you have with you kids because time flies by so very fast and the next thing you know your sending them off to college! :(
Momma Hayes
"Stay Strong, Believe"~Carter Hayes
Our KU admissions rep Jon did an outstanding job showing us around and really went the extra mile. He too was a pre-med student and actually knew about CMT!!!!! HUGE BONUS! He told us that they have a shuttle for students that break their leg or have a disability, were it will pick them up from their dorm and take them to their classes. Carter would give him/her his schedule and they would be there waiting for him and take him to his next destination! SUPER COOL! Plus they put in pathways all over campus that would allow him to get up the hill without using the stairs. Jon set it up so we did a campus tour, housing tour and he even drove us around campus and showed us downtown Lawrence. Overall, it was an amazing trip and we both fell in love with KU. I think I cried the whole time we were there! LOL I am such a baby when it comes to my baby.:)
Now we have 8 days left of the Junior year and we will be applying and visiting campuses all summer. Next stop is SFA (Stephen F Austin) which is here in Texas, no not in Austin, it is in Nacogdoches. It is about 4-4.5 hrs away so not too far from home. We will be visiting them the week of June 18th! We will let ya know how it goes! They too have a good pre-med program, cycling club and a really good physics and astronomy program. Carter wants to go to become a doctor, a general surgeon to be exact, so he is choosing physics as his major and astronomy as a possible minor. SFA has the second largest Observatory in Texas and the Central Time Zone! Pretty cool! Carter is really looking forward to the tour and he is very excited because his Nana will be taking him! Yep, my mom really wants to experience seeing her oldest grandson visit a college so she is flying in that week. Crazy cause she was just here on the week of May 7th, she came down before her visit to her oncologist in Louisiana. Anyway, we will see what he thinks of SFA.
Then we will be off to see the University of Arkansas. Which believe it or not is only 5-5.5 hours away. Not bad. They too have a great pre-med program, physics program and he knows people that go there and are looking to go there. So that would be nice. Plus they too have a cycling club and full of traditions too!
I know a lot of people think I am crazy for being so emotional and worrying but they don't have a child with a disease that has no cure and progresses. I know he will be fine cause that is just who he is. He doesn't give up, fights hard for what he wants and doesn't let his CMT get in the way. However, as a mom I worry about him being so far away from home and that his disease will progress. It has been pretty good but lately he is complaining more and more about his left leg. It is really tight and we have noticed that he is loosing muscle in his feet. Muscle atrophy in his feet and lower calf is progressing. Really hoping the stretches the physical therapist gave him and his leg braces will help. He is using the braces again and is able to wear them longer and longer as each day goes by. Praying they will help.
Of course do you think this is stopping him from planning his next triathlon? NO!!!! His swim coach is pushing him hard and he says it feels good in the pool, no pain. :) He wants to do one more tri this summer, we haven't found one yet that works into the schedule but I am sure he will find one.
We will keep you all posted on the college journey. Any advice from fellow CMTers?
Until Next Time..................Cherish the moments you have with you kids because time flies by so very fast and the next thing you know your sending them off to college! :(
Momma Hayes
"Stay Strong, Believe"~Carter Hayes
Thursday, May 16, 2013
Conquered the Caveman!
I remember my alarm sounding off at 4:00 am and thinking today is the day, the day to prove to myself that I can do anything. Rolled outta bed and I could start to feel the nerves kicking in. I start to get ready and then my mom tells me it is only going to be in the 40's this morning! Really? Really? Just figures. We load up the car, eat a small breakfast and head for the race. My dad and I get there first and its 5:30 and the parking lot is almost packed! The race doesn't start until 7. My mom and brothers soon follow.
It is cold and dark out. Cold enough to see your own breath. I get my bike and head over toward the transition center. There is already a line. While I wait to get in, they come by and do body markings. You get your number marked on your arm and on one calf it is your age and on the other your number. Now not only am I cold, the nerves charge through me. It is real, I am really doing my first tri! After setting my bike and race gear up in transition center I head over to pool area to get my timing chip and then line up for start. The race is sold out! Over 600 participants!
Around 6:45 they tell us to line up by number for the start of the race. I am number 63! Unfortunately, I had to wait outside in nothing but my tri shorts! It was so unbelievably cold, I was shivering and just wanted to get inside the pool. I could feel my muscles start to tighten. Finally, I am up next, I jump in the pool and start to swim. The swimming was a lot harder than I ever imagined. I kept thinking just don't stop, keep going it will be over soon. The water was so choppy in the pool due to so many people in at same time. I remember getting out of the pool and thinking to myself, THANK GOD that is over, now the easy part.
I run to transition station I can hear my family yelling GO CARTER! I hurry to put on my socks, bike shoes and helmet. As soon as I get on the bike I know I got this. The next two parts of the tri are the easy parts for me. I love to cycle and I run Cross Country for my high school, so I got this.
As I come up the last hill I hear my dad and little brother, Ayden yelling "GO CARTER, GO!" Then I come to the last stretch before the transition and I see my mom and brother, Zach. I hear them yell "GO CARTER! YOU ARE DOING AWESOME!" Thank God for my family pushing me. Throughout the race I could hear them yelling GO CARTER! They split up so my dad and little brother would be at one section to cheer me on and my mom and other brother at another to cheer me on, so I basically had support throughout the whole race. THANKS GUYS!
I hurry off the bike and change into my running shoes and start to run. As I start to run I realize I am almost done! After the first mile I am hot, tired and my legs and feet are killing me. All that keeps running through my head is don't give up, push through the pain, do not walk, whatever you do, do not walk! I look up and there is my mom and brother yelling "You only have 1/2 mile left! Keep it up!" Thank God is all I can think at that time. My legs felt like jelly and pains were shooting through my feet and legs. Then I come around the corner and I see the finish line and surge toward it.
I FINISHED MY FIRST TRIATHLON! I DID IT! I did not finish first, not even in top 100 but I finished! I came in 245th place and finished in 1 hour 25 minutes. Plus I was able to wear my Carter's Challenge Race jersey and raise awareness for my disease.
So remember, just because you have a disability does not mean you give up. You can do anything you set your mind to. The sky is the limit!
Until next time...............Don't give up, keep fighting the fight!
Carter
It is cold and dark out. Cold enough to see your own breath. I get my bike and head over toward the transition center. There is already a line. While I wait to get in, they come by and do body markings. You get your number marked on your arm and on one calf it is your age and on the other your number. Now not only am I cold, the nerves charge through me. It is real, I am really doing my first tri! After setting my bike and race gear up in transition center I head over to pool area to get my timing chip and then line up for start. The race is sold out! Over 600 participants!
Around 6:45 they tell us to line up by number for the start of the race. I am number 63! Unfortunately, I had to wait outside in nothing but my tri shorts! It was so unbelievably cold, I was shivering and just wanted to get inside the pool. I could feel my muscles start to tighten. Finally, I am up next, I jump in the pool and start to swim. The swimming was a lot harder than I ever imagined. I kept thinking just don't stop, keep going it will be over soon. The water was so choppy in the pool due to so many people in at same time. I remember getting out of the pool and thinking to myself, THANK GOD that is over, now the easy part.
I run to transition station I can hear my family yelling GO CARTER! I hurry to put on my socks, bike shoes and helmet. As soon as I get on the bike I know I got this. The next two parts of the tri are the easy parts for me. I love to cycle and I run Cross Country for my high school, so I got this.
As I come up the last hill I hear my dad and little brother, Ayden yelling "GO CARTER, GO!" Then I come to the last stretch before the transition and I see my mom and brother, Zach. I hear them yell "GO CARTER! YOU ARE DOING AWESOME!" Thank God for my family pushing me. Throughout the race I could hear them yelling GO CARTER! They split up so my dad and little brother would be at one section to cheer me on and my mom and other brother at another to cheer me on, so I basically had support throughout the whole race. THANKS GUYS!
I hurry off the bike and change into my running shoes and start to run. As I start to run I realize I am almost done! After the first mile I am hot, tired and my legs and feet are killing me. All that keeps running through my head is don't give up, push through the pain, do not walk, whatever you do, do not walk! I look up and there is my mom and brother yelling "You only have 1/2 mile left! Keep it up!" Thank God is all I can think at that time. My legs felt like jelly and pains were shooting through my feet and legs. Then I come around the corner and I see the finish line and surge toward it.
I FINISHED MY FIRST TRIATHLON! I DID IT! I did not finish first, not even in top 100 but I finished! I came in 245th place and finished in 1 hour 25 minutes. Plus I was able to wear my Carter's Challenge Race jersey and raise awareness for my disease.
So remember, just because you have a disability does not mean you give up. You can do anything you set your mind to. The sky is the limit!
Until next time...............Don't give up, keep fighting the fight!
Carter
Thursday, April 18, 2013
Packet Pick up for Caveman and Prayers to Boston & West, Texas
This week has been a crazy busy for my family and I. Let me first say my thoughts and prayers go out to those who were at the Boston Marathon. Such a horrible tragedy and I will pray for all those affected. Another horrible tragedy in West Texas happened tonight. My thoughts and prayers are also with those in West, Texas. What a week.....
This week is my last week to train for my first triathlon! As many of you know the Caveman is a sprint triathlon held in my home town of Flower Mound, Texas. I just found out that the decided for safety reasons to redo the course! So we will now be riding 14 miles instead of 13! Just to recap the swim is 275 yards, bike 14 miles and run a 5k! My coach, Will told me to take it easy this week, wind down for the race. Not to push to hard but still swim, bike and run to keep my endurance up. The great thing is I get to eat a ton this week. My mom is making these great dinners for me lots of protein and a ton of pasta and potatoes. Thanks momma Hayes.
We went to Bicycles Plus to pick up my race packet tonight. My race number is 63! Oh yeah! In the packet was a bunch of free goodies, a shirt and hat and of course the packet about the race rules and procedures. Getting really excited about race and a little nervous. Found out that the transition station opens at 5:45 am, this is where I will put my bike and transition between the swim and bike and the bike and run. Body markings begin at 6 am, yes I get body paint, oh yeah! Then we line up at 6:35 for race meeting and to get ready for the swim portion. All Cave people report at 7 am for the start of the race! Praying for great weather, not the hot and humid weather we have been having. So far weather guys say it will be 50 or so when we start the race. Not bad hoping for it to be a little warmer but we will see. WISH ME LUCK!
Remember, pain is temporary, quitting is forever. Believe me I know, I live with pain from my CMT but it is temporary, it does subside. If I quit running, cycling, swimming or my triathlons that will last forever. I will always remember that I gave up. SO DON'T GIVE UP! KEEP FIGHTING THE FIGHT!
Until Next Time.....Fight the fight and always, always "STAY STRONG, BELIEVE"
Carter Hayes
#Prayers4Boston #CMT
This week is my last week to train for my first triathlon! As many of you know the Caveman is a sprint triathlon held in my home town of Flower Mound, Texas. I just found out that the decided for safety reasons to redo the course! So we will now be riding 14 miles instead of 13! Just to recap the swim is 275 yards, bike 14 miles and run a 5k! My coach, Will told me to take it easy this week, wind down for the race. Not to push to hard but still swim, bike and run to keep my endurance up. The great thing is I get to eat a ton this week. My mom is making these great dinners for me lots of protein and a ton of pasta and potatoes. Thanks momma Hayes.
We went to Bicycles Plus to pick up my race packet tonight. My race number is 63! Oh yeah! In the packet was a bunch of free goodies, a shirt and hat and of course the packet about the race rules and procedures. Getting really excited about race and a little nervous. Found out that the transition station opens at 5:45 am, this is where I will put my bike and transition between the swim and bike and the bike and run. Body markings begin at 6 am, yes I get body paint, oh yeah! Then we line up at 6:35 for race meeting and to get ready for the swim portion. All Cave people report at 7 am for the start of the race! Praying for great weather, not the hot and humid weather we have been having. So far weather guys say it will be 50 or so when we start the race. Not bad hoping for it to be a little warmer but we will see. WISH ME LUCK!
Remember, pain is temporary, quitting is forever. Believe me I know, I live with pain from my CMT but it is temporary, it does subside. If I quit running, cycling, swimming or my triathlons that will last forever. I will always remember that I gave up. SO DON'T GIVE UP! KEEP FIGHTING THE FIGHT!
Until Next Time.....Fight the fight and always, always "STAY STRONG, BELIEVE"
Carter Hayes
#Prayers4Boston #CMT
Saturday, April 6, 2013
Training for the Caveman Triathlon April 21st!
My mom has been posting more than me so I thought I better jump on or else! LOL
So I decided to do a triathlon this year to push my limits a little farther and to raise awareness for CMT. My parents found a local one in our town called "The Caveman Triathlon". We all thought it would be best that my first triathlon is number one in a pool and a smaller one. The Caveman Triathlon consists of a 275 yard swim, 13 mile bike ride and finishes off with a sweet 3.1 run! Oh yeah! Not by any means a Ironman but I will do that at some point. :)
In order to train for this my parents hired a swim coach who does triathlons himself. I cycle and run several times a week, swim at least 4 days and lift weights off and on. I have completely cut out all fast food (thanks to the movie Supersize Me), eat a ton of protein and lots of fruits and veggies. Cutting out the fast food wasn't as hard as I thought it would be. Overall, the eating has not been the hard part....the training has been.
See I ran into a little bit of issue while training. A few weeks ago I came down with a horrible pain in my lower right back area. Basically from your lower lumbar over to the right side. It would come and go but then it got to the point where I couldn't really move. No its not my appendix had that removed already. On top of that I was having pain again in the area where I had my hernia. After many tests they believe I had kidney stones. Oh and then of course as you all know there is the CMT pain! I have gotten used to the pain in my legs and feet but recently I am getting pain in my arms and hands. It slowed me down for a bit but I am up and running at full speed again.
15 more days until THE CAVEMAN!
Remember, treat everyday as if was going to be your last. I like many others with CMT do not know when our legs will give out if they do at all. So why not push the limits? LIVE FOR THE DAY!
Carter Hayes
"Stay Strong, Believe"
So I decided to do a triathlon this year to push my limits a little farther and to raise awareness for CMT. My parents found a local one in our town called "The Caveman Triathlon". We all thought it would be best that my first triathlon is number one in a pool and a smaller one. The Caveman Triathlon consists of a 275 yard swim, 13 mile bike ride and finishes off with a sweet 3.1 run! Oh yeah! Not by any means a Ironman but I will do that at some point. :)
In order to train for this my parents hired a swim coach who does triathlons himself. I cycle and run several times a week, swim at least 4 days and lift weights off and on. I have completely cut out all fast food (thanks to the movie Supersize Me), eat a ton of protein and lots of fruits and veggies. Cutting out the fast food wasn't as hard as I thought it would be. Overall, the eating has not been the hard part....the training has been.
See I ran into a little bit of issue while training. A few weeks ago I came down with a horrible pain in my lower right back area. Basically from your lower lumbar over to the right side. It would come and go but then it got to the point where I couldn't really move. No its not my appendix had that removed already. On top of that I was having pain again in the area where I had my hernia. After many tests they believe I had kidney stones. Oh and then of course as you all know there is the CMT pain! I have gotten used to the pain in my legs and feet but recently I am getting pain in my arms and hands. It slowed me down for a bit but I am up and running at full speed again.
15 more days until THE CAVEMAN!
Remember, treat everyday as if was going to be your last. I like many others with CMT do not know when our legs will give out if they do at all. So why not push the limits? LIVE FOR THE DAY!
Carter Hayes
"Stay Strong, Believe"
Friday, April 5, 2013
"With God, All things are possible" Matthew 19:26
I know it has been over a year since my last post and I wish I could say I haven't posted because I was on a extended vaca but that is just not the case. This past year and a half has been filled with many ups and downs, twists and turns and so on. In February of 2012, my mom was diagnosed with stage 4 Carcinoid Cancer. Carcinoid is a rare cancer and like CMT it has NO CURE! My mom went through a major surgery over Mothers Day last year and just like her grandson she is a fighter! Her one year anniversary since the surgery is coming up and I am praying for good news.
So it was just to hard to keep writing emotionally for both Carter and myself since her diagnosis came just seven months after Carter's and Zach's. We both believe now that some healing has taken place, we need to really reach out again. I can tell you the one reason why I am writing today is Carter has shown that "With God, All things are possible." Matthew 19:26
As many of you know Carter quit the Cross Country after his Freshman year. It was not a choice made lightly and not an easy one by any means. His sophomore year was rough to say the least with many talks about working through the loss of his team. He missed the camaraderie, support and just the joy he received from running. Plus his team missed him. Can't say enough about those boys. So after many, many talks with doctors, we decided to let Carter join the Cross Country team again for his junior year! Carter spoke with coach T and we all agreed we would see how he handled the summer workouts. Guess what he did great! He had pain but pushed through it and let me tell you it made a huge difference for him mentally.
The team had their best season ever! It was the "YEAR OF THE SWEEP" as we like to call it. We won 4 meets in a row, District Champs, Region 1 Runner Up and the boys took 5th in State!!!!
Carter didn't come in first or even the top 10 but he did PR(personal record). He actually beat his record from Freshman year despite taking a whole year off and with CMT! He fought off the fatigue, leg pain, foot pain and chest pain. He never complained, he just dug his heels in and ran every meet as if it was last. Yes, I was at every meet and I did cry.....PROUD MOMMA.
I believe Carter's faith allowed him to persevere through his trial and tribulations. His faith will continue to guide him through his many challenges to come.
Remember, "pain is temporary, quitting is forever".
Momma Hayes (this is what the CC guys call me, so its sticking around)
"Stay Strong, Believe" ~Carter Hayes
So it was just to hard to keep writing emotionally for both Carter and myself since her diagnosis came just seven months after Carter's and Zach's. We both believe now that some healing has taken place, we need to really reach out again. I can tell you the one reason why I am writing today is Carter has shown that "With God, All things are possible." Matthew 19:26
As many of you know Carter quit the Cross Country after his Freshman year. It was not a choice made lightly and not an easy one by any means. His sophomore year was rough to say the least with many talks about working through the loss of his team. He missed the camaraderie, support and just the joy he received from running. Plus his team missed him. Can't say enough about those boys. So after many, many talks with doctors, we decided to let Carter join the Cross Country team again for his junior year! Carter spoke with coach T and we all agreed we would see how he handled the summer workouts. Guess what he did great! He had pain but pushed through it and let me tell you it made a huge difference for him mentally.
The team had their best season ever! It was the "YEAR OF THE SWEEP" as we like to call it. We won 4 meets in a row, District Champs, Region 1 Runner Up and the boys took 5th in State!!!!
Carter didn't come in first or even the top 10 but he did PR(personal record). He actually beat his record from Freshman year despite taking a whole year off and with CMT! He fought off the fatigue, leg pain, foot pain and chest pain. He never complained, he just dug his heels in and ran every meet as if it was last. Yes, I was at every meet and I did cry.....PROUD MOMMA.
I believe Carter's faith allowed him to persevere through his trial and tribulations. His faith will continue to guide him through his many challenges to come.
Remember, "pain is temporary, quitting is forever".
Momma Hayes (this is what the CC guys call me, so its sticking around)
"Stay Strong, Believe" ~Carter Hayes
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