I know it has been awhile since I have blogged. This is mostly due to me being sick with pneumonia and a bad sinus infection. I needed to focus on getting better, so I can be there for my kids. Which leads me to the other reason I have not blogged. I realized that I have let the website, fundraising, doctors appointments and other things just get in the way of me being a mom. I let the research and the disease consume me. What I needed to do was balance it all out, which I have learned is really hard, especially for someone who has a bit of a tendency to over work. Which over work leads to me becoming ill and so on....So for now I will blog only once or twice a week. This way I am still keeping everyone informed of anything new going on with us or new with CMT. As far as research, I will still be doing a lot of it just only at night. Fundraising and raising awareness will still be top priority and I will focus on that during the day.
The Scottish Rite appointment went well but not as I had expected it to go. We were there all day! I actually was late in picking up Ayden from Preschool. His school closes at 6:30 p.m. and I didn't pick him up until 7:00 p.m.! Thank goodness for Kendall! She is an amazing young woman who has been a guardian angel for us. Actually, the whole school has been a guardian angel.
When we arrived at Scottish Rite we were immediately taken over to the CMT Clinic and introduced to Dr. Iannaccone's medical assistant. She was with us pretty much all day. We spent the first couple of hours filling out paperwork, answering questions about the boys health, symptoms, school and so forth. She did a physical evaluation on them both. After she was done we saw a nutritionist, who spoke to us about the importance of healthy eating, vitamins and so on. Next was a physical therapist, who evaluated the boys and asked more questions. She then came up with a therapy routine for each boy. Then Dr. Iannaccone came in with her whole team. They asked even more questions, watched the boys walk, examined them and talked a lot amongst themselves. The boys were very nervous since they were kinda in the spotlight. There were about 7 adults in the room with us, all looking at them, asking them to do things and asking us questions. After they left she sent in the occupational therapist to examine the boys and ask more questions! Finally, we were done with all that.
Dr. Iannaccone and her team told us they will be doing a DNA test on Carter to determine what kind of CMT he has! Thank God! This will allow us to see if he will pass it on and if so to who. It will also allow us to look at clinical trials. She also wants them both to start physical therapy and do it once a day, everyday! She also wants to put Carter into braces at night. He will be wearing braces on both legs all night for a long time. She does not believe in surgery so, we will be trying the bracing. So we were sent down to Orthotics to do the casting on both legs for the braces.
I am a worried about the emotional effect it will have on Carter having to wear night bracing and the physical part as well. I know being a 16 year old is not easy in of it self but having to wear braces on both legs is just going to make it that much harder. I am not a huge fan of the bracing since I have been told it won't work on him. Carter and I agreed to try it but I still believe surgery is the only option for him. Several Doctors have said that the only way to help him walk, without walking on his toes, is through surgery. I will be asking for a 3rd opinion since I have one Dr. saying surgery and the other now saying bracing. Only time will tell. We go back on October 26th to pick up the braces and learn about them.
So as for now I have not learned anything new from Scottish Rite. We will find out the results of DNA in 4-6 weeks and will go back on 26th for braces. I am disappointed but I am also very grateful for having the opportunity to go there. Hopefully we will learn more at our next appointment once they know what type.
Until Next Time.................."Stay Strong, Believe"~Carter Hayes
Tuesday, October 11, 2011
Sunday, October 2, 2011
Scottish Rite Tomorrow and Carter raised $1164.00 For CMTA!
I cannot believe that October 3rd is finally here! No more waiting...Scottish Rite here we come! Both boys are going to be seen tomorrow and we are expected to be there all day. I am so thankful that we got in so soon, even though it seems like its been forever! Just so grateful to the wonderful Doctors who helped get them in so soon.
I have all the paperwork they requested filled out, all the medical records and orthotics ready! I am really hoping we will get some answers tomorrow but I am not counting on it.
There area a couple of things that I really want to happen tomorrow. One is for them to tell us what is going on with Carter's right leg. His right leg started twitching this last week and we don't know why. It is starting to bother him since it just happens at random times. He will be sitting in class and all of a sudden it starts to twitch. Sometimes it will twitch for a minute or two and other times longer.
The second thing is for them to help Zach with his toes. His big toe is infected and he keeps picking at it but since he cannot feel anything, he keeps doing it. So now it is all bruised from him messing around with it. He is on antibiotics for it but she said they may have to go in and take the nail off! She told Zach I bet you feel that! I just hope they can help us with his toe issues and we don't have to have them take the nail off!
The other big ones for me are Carter's feet, are we going to have to have surgery? Will it help him? How long for recovery? Is it better to wait or do it now? And of course Carter's chest pain and pressure. He says that it comes and goes. His regular Dr. told him last Wednesday no more running at all! At least until we get a stress EKG done and we go to Scottish Rite and see what they say about it. I also really want to know what we can do for Zach's feet too. Even though he doesn't walk on his toes or have the hammered toes, he does have really bad pigeon feet! We will see......
I know we won't get too many answers tomorrow but I am hoping for some great information. I look forward to meeting Dr. Iannaccone and learning more about CMT from her and her staff.
I know I still have not posted the pictures or blogged much about race. I will just still trying to get better. Plus my husband cannot find the pictures! So I am hoping my mom has them!!!! Scary! I tell ya never leave anything up to a man! LOL! Just kidding all you men out there!
To end on a great note, I would like to thank everyone for donating to Carter's Birthday Wish! Because we had so many generous donations he was able to raise a whopping $1164.00! THANKS SO MUCH FOR YOUR SUPPORT! WE TRULY ARE BLESSED TO HAVE SUCH WONDERFUL FRIENDS AND FAMILY. LOVE YOU ALL!
Until Next Time.............Anything is possible if you just BELIEVE!
"Stay Strong, Believe!"~Carter Hayes
I have all the paperwork they requested filled out, all the medical records and orthotics ready! I am really hoping we will get some answers tomorrow but I am not counting on it.
There area a couple of things that I really want to happen tomorrow. One is for them to tell us what is going on with Carter's right leg. His right leg started twitching this last week and we don't know why. It is starting to bother him since it just happens at random times. He will be sitting in class and all of a sudden it starts to twitch. Sometimes it will twitch for a minute or two and other times longer.
The second thing is for them to help Zach with his toes. His big toe is infected and he keeps picking at it but since he cannot feel anything, he keeps doing it. So now it is all bruised from him messing around with it. He is on antibiotics for it but she said they may have to go in and take the nail off! She told Zach I bet you feel that! I just hope they can help us with his toe issues and we don't have to have them take the nail off!
The other big ones for me are Carter's feet, are we going to have to have surgery? Will it help him? How long for recovery? Is it better to wait or do it now? And of course Carter's chest pain and pressure. He says that it comes and goes. His regular Dr. told him last Wednesday no more running at all! At least until we get a stress EKG done and we go to Scottish Rite and see what they say about it. I also really want to know what we can do for Zach's feet too. Even though he doesn't walk on his toes or have the hammered toes, he does have really bad pigeon feet! We will see......
I know we won't get too many answers tomorrow but I am hoping for some great information. I look forward to meeting Dr. Iannaccone and learning more about CMT from her and her staff.
I know I still have not posted the pictures or blogged much about race. I will just still trying to get better. Plus my husband cannot find the pictures! So I am hoping my mom has them!!!! Scary! I tell ya never leave anything up to a man! LOL! Just kidding all you men out there!
To end on a great note, I would like to thank everyone for donating to Carter's Birthday Wish! Because we had so many generous donations he was able to raise a whopping $1164.00! THANKS SO MUCH FOR YOUR SUPPORT! WE TRULY ARE BLESSED TO HAVE SUCH WONDERFUL FRIENDS AND FAMILY. LOVE YOU ALL!
Until Next Time.............Anything is possible if you just BELIEVE!
"Stay Strong, Believe!"~Carter Hayes
Wednesday, September 28, 2011
Another Medication Not To Take~ Alert
Just a quick post to make sure everyone is aware of this ALERT!
As I was going through my emails I came across one that had an ALERT for a Medication. Please click on the following link Levofloxacin Medication Alert and read the article. If you have CMT or if you are a caretaker to a CMTer please read and make a note of medication.
Until Next Time...............
As I was going through my emails I came across one that had an ALERT for a Medication. Please click on the following link Levofloxacin Medication Alert and read the article. If you have CMT or if you are a caretaker to a CMTer please read and make a note of medication.
Until Next Time...............
Tuesday, September 27, 2011
Winning-Is Not About Crossing The Finish Line First
I remember finally falling asleep somewhere around 2a.m. and thinking today is the day Carter will go head to head with his disease. Today is the day he will prevail....
Bzzz.Bzzz the alarm went off it was already 5:30 a.m., hadn't I just gone to sleep? Oh well, no rest for the weary. By the time Zach, Nana and I were ready, Sean had already had all the race stuff done! It was like someone gave him 10 cups of espresso. He had Carter down eating, he ate and he was double checking everything again!
We decided to join Carter for a quick bite and of course ran into a bunch of other racers preparing for the race as well. We finished eating and headed for the start line.
Arrival Time 6:45 a.m. Race Time 7:55 a.m.
Since we were there in plenty of time it allowed Carter to settle his nerves, even though he will never admit to being nervous. He was able to hydrate more and get in some warm up time. Plus it gave him a chance to see the other kids he was riding with. Carter's race jersey by far, I think was the best! He looked so awesome in his Carter's Challenger Race Jersey and supporting CMTA! We all wore our CMTA shirts as well, thanks Jeanna! So Team Carter's Challenge was pumped and ready!
Finally it was time to get him over the start line. They announced that the Junior Race would begin in a couple of minutes. We have never participated in a bike race before so, we really didn't know what to do.
Thank goodness a lot of the event coordinators were helpful. They told us Carter had to go through a pre race check.
1. Junior gears- Check
2. Race Number Visible-Check
3. USA Cycling License- Check
4.All systems a Go-Check
The guy told them all to watch the signs because there are several different courses. They had to follow the signs for the Jr 4/5 open. He also told them to be careful of the roads, since we have been in a severe drought the roads have cracked and they need to watch were they are riding.
They all bunched up and Carter was towards the back. We kept telling him just ride and have fun. Don't worry about anything else, just have fun and finish!
The announcer told them to get ready and next thing you know they are off!!!! We were all screaming and yelling and then he disappeared over the hill in the street. Sean and Zach quickly ran to the car to try and find a way to the first feed zone. Nana, Ayden and I held back so we could see the finish. One of the moms said don't worry he will be fine. It usually takes about 1 1/2 to 2 hours for them to finish. "Hopefully, he won't get dropped by the group." Huh? What are you kidding me? I hope not either, he has no idea where he is going or what he is doing! But, Carter is strong and if anything he is resourceful. So no worries...right?
Phone rings and its Zach yelling "we are following Carter! He got dropped by the group already." I could hear Sean cheering him on and telling him to shift into a different gear. Then Zach yelling "Go Carter!" He then told me not to worry cause he and daddy would make sure Carter was fine and take pics and video along the way.
As time went on I was more and more nervous and the my phone rang again. Zach said that they lost Carter. They had to stop and help another kid. Carter had caught up to one of the kids and was riding by him. Then all of sudden the kid hit a crack and went flying over his bike and into a ditch! Carter, Zach and Sean watched it all take place right in front of them. Carter said he slowed down and didn't know if he should stop or keep going. Then he heard his dad yelling "GO! CARTER KEEP GOING!" "WE GOT HIM CARTER GO!"
Sean and Zach immediately pulled the car over, hopped out and ran to the kid. He was shaken up pretty good. Chain was off of bike and he was in pain. Sean asked the kid do you want to me load your bike onto my car and drive you back to start line? The kid so no I want to try and finish! So Sean helped him get up, fixed his chain and got him on the road again. They did follow him for a bit but to be honest, Sean and Zach were more concerned with Carter and finding him.
As Sean and Zach approached this road they saw in the distance a kid being chased by a dog! Hmmm... Who do you think that was? Yep Carter.. I guess as Carter passed the farm house two dogs came out and started chasing him. He said the black lab just kept barking and running along the side of him. He said "I really didn't know what to do." He was scared to stop but also scared the dog was going to jump onto the bike and knock him over. So he said he started to peddle even harder and told the dog to go away and eventually the dog stopped! Crazy!!!! Only on a back country road race would this happen.
The boys caught up to Carter and watched him through the rest of the race. Encouraging him to push harder, peddle harder and to just keep going. Words of encouragement and love can go such a long way. They would call and let me listen to them cheering him on and in the end I think it was the best place for them to be. Zachy cheering, videotaping and encouraging his big brother to push through it. Sean, gently pushing and coaching his oldest son through his first road race to fight a horrible disease that has struck both of his older boys.
This race was not about winning, medals, time or distance, this race was about a young man finding the courage. strength and passion to fight CMT. To show that this disease will not stop him and to show his brothers that they too can fight this disease head on. TOGETHER THEY CAN DO ANYTHING!
Did Carter finish the race? YOU BET HE DID! He finished it about 1 hour and 45 minutes. He didn't win but WINNING IS NOT ABOUT CROSSING THE FINISH LINE FIRST!
WINNING IS ABOUT FEELING GOOD ABOUT YOURSELF, STAYING STRONG AND BELIEVING IN YOURSELF!
Even though he was in pain and was exhausted after the race he said he would gladly do it all over again. He cannot wait for his next race. So back to training and looks like we might already have another race in mind......
UNTIL NEXT TIME.............REMEMBER YOU CAN DO ANYTHING IF YOU BELIEVE!
"STAY STRONG, BELIEVE"~Carter Hayes
P.S. I just have to say as a mom, this will be one of those moments in life I will never forget. I AM SO PROUD OF YOU CARTER! Again, you inspire me! Zachy- You would make a great coach. Thanks for cheering on your big bro and taking such great pics and video xo mom
Bzzz.Bzzz the alarm went off it was already 5:30 a.m., hadn't I just gone to sleep? Oh well, no rest for the weary. By the time Zach, Nana and I were ready, Sean had already had all the race stuff done! It was like someone gave him 10 cups of espresso. He had Carter down eating, he ate and he was double checking everything again!
We decided to join Carter for a quick bite and of course ran into a bunch of other racers preparing for the race as well. We finished eating and headed for the start line.
Arrival Time 6:45 a.m. Race Time 7:55 a.m.
Since we were there in plenty of time it allowed Carter to settle his nerves, even though he will never admit to being nervous. He was able to hydrate more and get in some warm up time. Plus it gave him a chance to see the other kids he was riding with. Carter's race jersey by far, I think was the best! He looked so awesome in his Carter's Challenger Race Jersey and supporting CMTA! We all wore our CMTA shirts as well, thanks Jeanna! So Team Carter's Challenge was pumped and ready!
Finally it was time to get him over the start line. They announced that the Junior Race would begin in a couple of minutes. We have never participated in a bike race before so, we really didn't know what to do.
Thank goodness a lot of the event coordinators were helpful. They told us Carter had to go through a pre race check.
1. Junior gears- Check
2. Race Number Visible-Check
3. USA Cycling License- Check
4.All systems a Go-Check
The guy told them all to watch the signs because there are several different courses. They had to follow the signs for the Jr 4/5 open. He also told them to be careful of the roads, since we have been in a severe drought the roads have cracked and they need to watch were they are riding.
They all bunched up and Carter was towards the back. We kept telling him just ride and have fun. Don't worry about anything else, just have fun and finish!
The announcer told them to get ready and next thing you know they are off!!!! We were all screaming and yelling and then he disappeared over the hill in the street. Sean and Zach quickly ran to the car to try and find a way to the first feed zone. Nana, Ayden and I held back so we could see the finish. One of the moms said don't worry he will be fine. It usually takes about 1 1/2 to 2 hours for them to finish. "Hopefully, he won't get dropped by the group." Huh? What are you kidding me? I hope not either, he has no idea where he is going or what he is doing! But, Carter is strong and if anything he is resourceful. So no worries...right?
Phone rings and its Zach yelling "we are following Carter! He got dropped by the group already." I could hear Sean cheering him on and telling him to shift into a different gear. Then Zach yelling "Go Carter!" He then told me not to worry cause he and daddy would make sure Carter was fine and take pics and video along the way.
As time went on I was more and more nervous and the my phone rang again. Zach said that they lost Carter. They had to stop and help another kid. Carter had caught up to one of the kids and was riding by him. Then all of sudden the kid hit a crack and went flying over his bike and into a ditch! Carter, Zach and Sean watched it all take place right in front of them. Carter said he slowed down and didn't know if he should stop or keep going. Then he heard his dad yelling "GO! CARTER KEEP GOING!" "WE GOT HIM CARTER GO!"
Sean and Zach immediately pulled the car over, hopped out and ran to the kid. He was shaken up pretty good. Chain was off of bike and he was in pain. Sean asked the kid do you want to me load your bike onto my car and drive you back to start line? The kid so no I want to try and finish! So Sean helped him get up, fixed his chain and got him on the road again. They did follow him for a bit but to be honest, Sean and Zach were more concerned with Carter and finding him.
As Sean and Zach approached this road they saw in the distance a kid being chased by a dog! Hmmm... Who do you think that was? Yep Carter.. I guess as Carter passed the farm house two dogs came out and started chasing him. He said the black lab just kept barking and running along the side of him. He said "I really didn't know what to do." He was scared to stop but also scared the dog was going to jump onto the bike and knock him over. So he said he started to peddle even harder and told the dog to go away and eventually the dog stopped! Crazy!!!! Only on a back country road race would this happen.
The boys caught up to Carter and watched him through the rest of the race. Encouraging him to push harder, peddle harder and to just keep going. Words of encouragement and love can go such a long way. They would call and let me listen to them cheering him on and in the end I think it was the best place for them to be. Zachy cheering, videotaping and encouraging his big brother to push through it. Sean, gently pushing and coaching his oldest son through his first road race to fight a horrible disease that has struck both of his older boys.
This race was not about winning, medals, time or distance, this race was about a young man finding the courage. strength and passion to fight CMT. To show that this disease will not stop him and to show his brothers that they too can fight this disease head on. TOGETHER THEY CAN DO ANYTHING!
Did Carter finish the race? YOU BET HE DID! He finished it about 1 hour and 45 minutes. He didn't win but WINNING IS NOT ABOUT CROSSING THE FINISH LINE FIRST!
WINNING IS ABOUT FEELING GOOD ABOUT YOURSELF, STAYING STRONG AND BELIEVING IN YOURSELF!
Even though he was in pain and was exhausted after the race he said he would gladly do it all over again. He cannot wait for his next race. So back to training and looks like we might already have another race in mind......
UNTIL NEXT TIME.............REMEMBER YOU CAN DO ANYTHING IF YOU BELIEVE!
"STAY STRONG, BELIEVE"~Carter Hayes
P.S. I just have to say as a mom, this will be one of those moments in life I will never forget. I AM SO PROUD OF YOU CARTER! Again, you inspire me! Zachy- You would make a great coach. Thanks for cheering on your big bro and taking such great pics and video xo mom
Friday, September 16, 2011
Lets Get Ready To Rumble!!! Cotton Patch Challenge!
Well we made it to Greenville, Texas in one piece! At least without to much whining, are we there yet? We checked into our hotel, went to pick up race packet and then ate dinner. Now its time for bed.
Carter is sooo excited yet a little nervous. We told him to relax and have fun which I know is easier said then done. We told him its not about where you finish its about having fun and raising awareness for CMT. He siad he knows but just wants to finish race strong. I know without a doubt he will give 100%.
He ate a big dinner to insure he will have plenty of food for ride and went to bed early since we have to be there at 6:55 am so we are up at 5:30am, yep that's right 5:30! What the heck was I thinking? Of course it's like 10:45pm n I am still blogging and posting updates on facebbok n twitter.....need sleep!
It started to drizzle tonight we are hoping for sunshine in morning. especially since this is his first race and he has never ridden in rain before. We haven't had any here in Texas! News says at race timeitwill be 72 so we are hoping they are correct.
Carter's race will begin at 7:55am and is 31 miles long. Sean, will be driving to checkpoints to check on him and me,my mom and his brother's,Zach n Ayden will be there at beginning of race and then head over to finish. We will be taking lots of pics and posting them.
I actually think we are more nervous then Carter! Sean is busy getting all race gear ready and checking bike. He has double,triple checked all gear and has water and sport bottles ready. I on the other hand don't know anything about cycling so I am in charge of other kids and raising awareness and cheering!
Unfortunately, I am sicker than a dog and don't have much of a voice, so my normal loud mouth will not be up to par tomorrow. None the less, I will be cheering with what little voice I have left. Cause that is what mom's do!
Wish us luck, well Carter luck! Please send us tweets @carterschalleng on twitter. I will be tweeting before, during and after race. Yes, our twitter is carterschalleng without the e because the e made it too long....
Until Next Time......GO CARTER!
"Stay Strong, Believe!"Carter Hayes
Carter is sooo excited yet a little nervous. We told him to relax and have fun which I know is easier said then done. We told him its not about where you finish its about having fun and raising awareness for CMT. He siad he knows but just wants to finish race strong. I know without a doubt he will give 100%.
He ate a big dinner to insure he will have plenty of food for ride and went to bed early since we have to be there at 6:55 am so we are up at 5:30am, yep that's right 5:30! What the heck was I thinking? Of course it's like 10:45pm n I am still blogging and posting updates on facebbok n twitter.....need sleep!
It started to drizzle tonight we are hoping for sunshine in morning. especially since this is his first race and he has never ridden in rain before. We haven't had any here in Texas! News says at race timeitwill be 72 so we are hoping they are correct.
Carter's race will begin at 7:55am and is 31 miles long. Sean, will be driving to checkpoints to check on him and me,my mom and his brother's,Zach n Ayden will be there at beginning of race and then head over to finish. We will be taking lots of pics and posting them.
I actually think we are more nervous then Carter! Sean is busy getting all race gear ready and checking bike. He has double,triple checked all gear and has water and sport bottles ready. I on the other hand don't know anything about cycling so I am in charge of other kids and raising awareness and cheering!
Unfortunately, I am sicker than a dog and don't have much of a voice, so my normal loud mouth will not be up to par tomorrow. None the less, I will be cheering with what little voice I have left. Cause that is what mom's do!
Wish us luck, well Carter luck! Please send us tweets @carterschalleng on twitter. I will be tweeting before, during and after race. Yes, our twitter is carterschalleng without the e because the e made it too long....
Until Next Time......GO CARTER!
"Stay Strong, Believe!"Carter Hayes
Thursday, September 15, 2011
Happy 16th Birthday Carter!!!!!
Ten years ago Carter was born during an emergency c-section. Carter was called a miracle baby at the hospital. He was only 3lbs 11.5 oz! I knew he was special from the moment he was born and that he was meant to do great things.
I just didn't know that these great things would be centered around Charcot-Marie-Tooth Disease. That on his sixteenth birthday we would be doing fundraisers to raise awareness about a disease he and his brother suffer from. I didn't know that the great things he was born to do would be about him taking a stand against a disease and help raise funds to find a cure for him and his little brother, Zachary. What I did know is how strong he is and how he won't back down from anything.
Carter fought his way into this world and he is still fighting. Defying all odds when he was in the womb and defying all odds throughout his 16 years. Carter is my hero and Carter is my guardian angel. I am truly blessed to have such a wonderful child and to have the opportunity to watch him grow from a little boy into a handsome, smart, thoughtful, strong young man.
Carter, I love you and I am so proud to be your mom. The way you have stepped up to be such an inspiration to not only your younger brothers, but to others who have CMT is just simply amazing. You make me want to be the best mom I can be for you and your brothers and sister.
HAPPY 16TH BIRTHDAY BUDDY! WE LOVE YOU SO MUCH AND WE ARE ALL SO PROUD OF YOU!
Until Next Time...................WHO INSPIRES YOU?
"Stay Strong, Believe"~Carter Hayes
I just didn't know that these great things would be centered around Charcot-Marie-Tooth Disease. That on his sixteenth birthday we would be doing fundraisers to raise awareness about a disease he and his brother suffer from. I didn't know that the great things he was born to do would be about him taking a stand against a disease and help raise funds to find a cure for him and his little brother, Zachary. What I did know is how strong he is and how he won't back down from anything.
Carter fought his way into this world and he is still fighting. Defying all odds when he was in the womb and defying all odds throughout his 16 years. Carter is my hero and Carter is my guardian angel. I am truly blessed to have such a wonderful child and to have the opportunity to watch him grow from a little boy into a handsome, smart, thoughtful, strong young man.
Carter, I love you and I am so proud to be your mom. The way you have stepped up to be such an inspiration to not only your younger brothers, but to others who have CMT is just simply amazing. You make me want to be the best mom I can be for you and your brothers and sister.
HAPPY 16TH BIRTHDAY BUDDY! WE LOVE YOU SO MUCH AND WE ARE ALL SO PROUD OF YOU!
Until Next Time...................WHO INSPIRES YOU?
"Stay Strong, Believe"~Carter Hayes
Monday, September 12, 2011
Looking back 10 years to 9/11 and Where We Are Now-Carter-Turns 16 and Cotton Patch Challenge!
Tonight I was on Facebook and one of my friends Sara posted something that just really rang true(see below.) I guess this week is not just a big week for Carter it is for me as well. My first born son, my guardian angel is turning the big 16. Sixteen is one of those big bdays because it symbolizes more independence, responsibility and maturity. Sixteen is when they get their drivers license which is a huge responsibility and leads to discovering new freedom. They become more aware of their future and start to seriously think about College and their future. All of these things leave me as a mom longing for the days when he was 6.
10 years ago on September 11 2001 we lived in Seattle, Washington. Carter was turning 6 on the 15th and Zach was just 8 months old. I remember waking up, getting everyone ready to take Carter to school,we dropped him off and went to go get my coffee at my fav coffee drive thru. When I pulled up the lady said "Oh my god can you believe what is happening? I looked at her a little puzzled, I had no idea what she was talking about and would have never guessed at what she was about to tell me. It all seemed like something out of a movie, could this really be happening here? In America? I quickly turned on my car radio and tried to call my husband but couldn't get through, so I tried the school and couldn't get through. At that point I just started driving back over to the school to go pick up Carter. Since no one seemed to know if and when there might be another attack. When I arrived at Carter's school there were a ton of people there doing the same thing. Pulling their kids out in order to assure their safety.
I remember Carter asking me questions and having to explain what was happening but not leading on that I too was afraid. I told him when we get home, go downstairs and play in the playroom while mommy watches the news and makes some calls. I told him don't worry, its going to be o.k.
I remember watching the towers go down and my heart sinking.The Pentagon and shaking my head and I remember hearing about United 93 and thinking what amazing heroes! I also remember that night we were all in fear, fear of the unknown. Would they strike again? If so where? As Sean and I lay in our bed that night we could hear fighter jets flying over. Something you don't hear to often. At times they were so low it sounded like a big boom. It was a night of little sleep.
Carter woke up the next day and of course was concerned about his bday party we had scheduled. So I got back on the phone and started asking the moms what should I do? We all decided the kids really needed the bday party still. They were only 5 and 6 and really didn't need to understand the full complexity of what had just happened. Plus it gave us adults time to comfort each other. So the party went on as planned.
Fast forward 10 years and here we are 9/11/2011 planning his 16th bday and his first road race with CMT at the Cotton Patch Challenge. Please pray for him to do well and have a great time. Amazing how time flies and how life has changed. We are now in Texas and Zach and Carter have Charcot-Marie-Tooth Disease, something I never even imagined would happen. Yet, here we are getting ready to celebrate his 16th bday in a couple of days and watch him take on CMT head to head. Am I worried yes, but Sean thinks I am a worry wart. I think I just love my kids an awful lot. On September 15th he will be 16 which for me means, he will be gone in two years to college, he will not need me as much as he used to, he will ignore me more often, choose his friends over me and maybe even a girlfriend over me! I hope he will always remember just how much I love him. How when he doesn't come home on time- mom doesn't sleep.
I know I will make it these next couple of years but it is going to be a rough rode emotionally. I know its time to let go a little but I am just not there! This whole post came from a post from a friend and it just happened to hit me on 9/11 and on his Sixteenth Bday week.
10 years ago on September 11 2001 we lived in Seattle, Washington. Carter was turning 6 on the 15th and Zach was just 8 months old. I remember waking up, getting everyone ready to take Carter to school,we dropped him off and went to go get my coffee at my fav coffee drive thru. When I pulled up the lady said "Oh my god can you believe what is happening? I looked at her a little puzzled, I had no idea what she was talking about and would have never guessed at what she was about to tell me. It all seemed like something out of a movie, could this really be happening here? In America? I quickly turned on my car radio and tried to call my husband but couldn't get through, so I tried the school and couldn't get through. At that point I just started driving back over to the school to go pick up Carter. Since no one seemed to know if and when there might be another attack. When I arrived at Carter's school there were a ton of people there doing the same thing. Pulling their kids out in order to assure their safety.
I remember Carter asking me questions and having to explain what was happening but not leading on that I too was afraid. I told him when we get home, go downstairs and play in the playroom while mommy watches the news and makes some calls. I told him don't worry, its going to be o.k.
I remember watching the towers go down and my heart sinking.The Pentagon and shaking my head and I remember hearing about United 93 and thinking what amazing heroes! I also remember that night we were all in fear, fear of the unknown. Would they strike again? If so where? As Sean and I lay in our bed that night we could hear fighter jets flying over. Something you don't hear to often. At times they were so low it sounded like a big boom. It was a night of little sleep.
Carter woke up the next day and of course was concerned about his bday party we had scheduled. So I got back on the phone and started asking the moms what should I do? We all decided the kids really needed the bday party still. They were only 5 and 6 and really didn't need to understand the full complexity of what had just happened. Plus it gave us adults time to comfort each other. So the party went on as planned.
Fast forward 10 years and here we are 9/11/2011 planning his 16th bday and his first road race with CMT at the Cotton Patch Challenge. Please pray for him to do well and have a great time. Amazing how time flies and how life has changed. We are now in Texas and Zach and Carter have Charcot-Marie-Tooth Disease, something I never even imagined would happen. Yet, here we are getting ready to celebrate his 16th bday in a couple of days and watch him take on CMT head to head. Am I worried yes, but Sean thinks I am a worry wart. I think I just love my kids an awful lot. On September 15th he will be 16 which for me means, he will be gone in two years to college, he will not need me as much as he used to, he will ignore me more often, choose his friends over me and maybe even a girlfriend over me! I hope he will always remember just how much I love him. How when he doesn't come home on time- mom doesn't sleep.
I know I will make it these next couple of years but it is going to be a rough rode emotionally. I know its time to let go a little but I am just not there! This whole post came from a post from a friend and it just happened to hit me on 9/11 and on his Sixteenth Bday week.
Saturday, September 10, 2011
Orthotics What You Need To Know
Carter's orthotic's finally arrived on Wednesday from Hanger Orthotics. Carter was a little worried about how long he would have to have them in and if they would hurt. Since this was our first time dealing with orthotics we really didn't know what to expect.
They told us to get him new shoes since the insoles would take up some room and that it will take a couple of weeks for him to work up to wearing them full time. We need to make sure that the shoe we get him has a removable insole and is not tight with the new insole. Carter starts off wearing the insert two times a day for 15 minutes for 3 days then tries to move up to 30 min 2 times a day and so forth. Until he is up to wearing them all the time.
The first night Carter wore them for 15 minutes but complained about pain. He said that it hurts to wear them. I told him it will take some getting used to this was his first time wearing them. But then Thursday he tried to wear them again for 15 minutes and complained of pain again. So for now he is only wearing them once a day for 15 minutes, basically we are off track big time. We are just going to gradually work our way into them. Gotta love teenagers!
Like I said we were new to all this so I though I would put together some helpful information on Orthotics for people.
What are Orthotics?
They are basically a device that fits into your shoe to help support and align your foot. They also provide correction and improve the function of the foot. In order to help your exact problem or problems you must get a prescription from you doctor to insure you get a "custom" orthotic to suit your needs. Remember, each person's foot is shaped differently so buying an over the counter insert will not help those with CMT.
What to expect when you go in for your custom orthotics.
When Carter went in for his they had did a full evaluation. A good specialists will ask you several questions about your daily living, any pain or discomfort you are having, medical history and so forth. They will also look at your feet, have you stand, walk, squat(if you can Carter can't really squat), walk on your heals(another thing Carter cannot do)..you get the idea. Neurological testing is another part of the exam as well. After examining your feet, gait and listening to you, they will determine what type of orthotic you will need.
How is the custom orthotic made?
The custom orthotic is made from a mold of your foot. The mold is an exact replica of your foots shape and contour. They are typically made from such materials as foams, rubbers, carbon fibers and more. Again, depending on your evaluation the specialist will determine what type of materials are used as well as how much support and control you'll need.
Will you have discomfort and how long will you need to have them?
Everyone is different, so some people may have mild discomfort and others moderate. This is why they gradually put you into them by having you wear them in small increments and working your way up to full time. Since the orthotic is realigning your lower extremities you may have some discomfort from your muscles trying to get used to the new alignment. From what I understand if after a few weeks you still feel some discomfort you should go back in for evaluation. As far as how long you have to wear them probably forever. Remember, they are improving your feet not correcting them. So as long as wear them you should feel some improvement. We were told you cannot expect miracles, they are not going to help straighten your toes or correct your arch. They will simply help support your foot and hopefully improve your way of life.
I hope this info helps someone. As I have said before I do not claim to be a doctor nor do I play one on t.v. I am just a mom trying to find my way through CMT for my boys.
Until Next Time.............I hope your feet are happy.....Mission Happy Feet
"Stay Strong, Believe"~Carter Hayes
They told us to get him new shoes since the insoles would take up some room and that it will take a couple of weeks for him to work up to wearing them full time. We need to make sure that the shoe we get him has a removable insole and is not tight with the new insole. Carter starts off wearing the insert two times a day for 15 minutes for 3 days then tries to move up to 30 min 2 times a day and so forth. Until he is up to wearing them all the time.
The first night Carter wore them for 15 minutes but complained about pain. He said that it hurts to wear them. I told him it will take some getting used to this was his first time wearing them. But then Thursday he tried to wear them again for 15 minutes and complained of pain again. So for now he is only wearing them once a day for 15 minutes, basically we are off track big time. We are just going to gradually work our way into them. Gotta love teenagers!
Like I said we were new to all this so I though I would put together some helpful information on Orthotics for people.
What are Orthotics?
They are basically a device that fits into your shoe to help support and align your foot. They also provide correction and improve the function of the foot. In order to help your exact problem or problems you must get a prescription from you doctor to insure you get a "custom" orthotic to suit your needs. Remember, each person's foot is shaped differently so buying an over the counter insert will not help those with CMT.
What to expect when you go in for your custom orthotics.
When Carter went in for his they had did a full evaluation. A good specialists will ask you several questions about your daily living, any pain or discomfort you are having, medical history and so forth. They will also look at your feet, have you stand, walk, squat(if you can Carter can't really squat), walk on your heals(another thing Carter cannot do)..you get the idea. Neurological testing is another part of the exam as well. After examining your feet, gait and listening to you, they will determine what type of orthotic you will need.
How is the custom orthotic made?
The custom orthotic is made from a mold of your foot. The mold is an exact replica of your foots shape and contour. They are typically made from such materials as foams, rubbers, carbon fibers and more. Again, depending on your evaluation the specialist will determine what type of materials are used as well as how much support and control you'll need.
Will you have discomfort and how long will you need to have them?
Everyone is different, so some people may have mild discomfort and others moderate. This is why they gradually put you into them by having you wear them in small increments and working your way up to full time. Since the orthotic is realigning your lower extremities you may have some discomfort from your muscles trying to get used to the new alignment. From what I understand if after a few weeks you still feel some discomfort you should go back in for evaluation. As far as how long you have to wear them probably forever. Remember, they are improving your feet not correcting them. So as long as wear them you should feel some improvement. We were told you cannot expect miracles, they are not going to help straighten your toes or correct your arch. They will simply help support your foot and hopefully improve your way of life.
I hope this info helps someone. As I have said before I do not claim to be a doctor nor do I play one on t.v. I am just a mom trying to find my way through CMT for my boys.
Until Next Time.............I hope your feet are happy.....Mission Happy Feet
"Stay Strong, Believe"~Carter Hayes
Thursday, September 8, 2011
Charcot Marie Tooth Awareness Month- Take The Challenge
WOW!!!! So far September has kicked off to a great start. Between the article in the Cross Timbers Gazette, the article on National CMT Resource Center, posting posters in local doctors offices and getting ready for the Cotton Patch Challenge my head is spinning!
We also have decided to have a booth at the Marcus 2 Cross Country Invitational on September 24th. We will be passing out information on CMT, selling Carter's Challenge bracelets, giving out CMTA bracelets n t-shirts, all to raise awareness for Charcot Marie Tooth Disease and the CMTA.
I also will be working with local businesses to raise awareness for CMT. Some of them are willing to help not only raise awareness but raise funds as well for research and one day a cure!
I WANT YOU ALL TO KNOW IF I, A STAY AT HOME MOM OF 4, CAN RAISE A BIT OF AWARENESS THEN U CAN TO!
I CHALLENGE EACH AND EVERYONE OF YOU TO DO ONE NEW EVENT, FACEBOOK POST, EMAIL, LETTER, NEWSPAPER AD, RADIO....SOMETHING BY MONDAY SEPTEMBER 30TH.
EACH INDIVIDUALS EFFORTS NO MATTER HOW SMALL CAN BRING US ONE STEP CLOSER TO A CURE!
SO PLEASE TAKE ON CARTERS CHALLENGE AND MAKE A DIFFERENCE TODAY. STAY STRONG, BELIEVE!
UNTIL NEXT TIME..........U CAN MAKE A DIFFERENCE!
We also have decided to have a booth at the Marcus 2 Cross Country Invitational on September 24th. We will be passing out information on CMT, selling Carter's Challenge bracelets, giving out CMTA bracelets n t-shirts, all to raise awareness for Charcot Marie Tooth Disease and the CMTA.
I also will be working with local businesses to raise awareness for CMT. Some of them are willing to help not only raise awareness but raise funds as well for research and one day a cure!
I WANT YOU ALL TO KNOW IF I, A STAY AT HOME MOM OF 4, CAN RAISE A BIT OF AWARENESS THEN U CAN TO!
I CHALLENGE EACH AND EVERYONE OF YOU TO DO ONE NEW EVENT, FACEBOOK POST, EMAIL, LETTER, NEWSPAPER AD, RADIO....SOMETHING BY MONDAY SEPTEMBER 30TH.
EACH INDIVIDUALS EFFORTS NO MATTER HOW SMALL CAN BRING US ONE STEP CLOSER TO A CURE!
SO PLEASE TAKE ON CARTERS CHALLENGE AND MAKE A DIFFERENCE TODAY. STAY STRONG, BELIEVE!
UNTIL NEXT TIME..........U CAN MAKE A DIFFERENCE!
Monday, September 5, 2011
CMT Doesn't Seem To Affect You.......Seriously?
I am having a hard time lately with some people saying to me "oh you are so lucky Carter and Zach really don't seem to be affected by CMT". They basically imply that it really doesn't affect us. Well, haven't they ever heard the saying don't judge a book by its cover? Just because Zach and Carter don't need braces right now and can still play, run and swim does not mean they aren't affected. What they don't see or notice is......
1. Because Zach has CMT he is a lot slower than his peers, trips over his own feet and doesn't jump well.
2. Zach has a hard time with shoes because of his arch, wide feet and sensory issues. Socks have to have no seam.
3. Zach has a hard time with homework because his hand tires quickly and cramps.
4. Carter has very high arches,hammer toes and he walks on his toes because of CMT.
5. Carter suffers from fatigue.
6. Carter gets pain in his feet, legs and knees. Sometimes so bad he has to lay down.
7. Carter cannot stand or walk for long periods without pain.
8. Carter also has a hard time with homework and taking notes because his hand tires quickly and cramps.
9. Carter's toes are numb and can cause him to get sores.
10. Buttoning shirts or trying to open jars is hard.
11. Carter had to change his school schedule because he cannot participate in Cross Country.
12. I can keep going but won't....
Can Carter run? Yes, he can but he is in pain the whole time. Did he run a mile in 5:31 on Saturday? Yes, he did but he did it in a lot of pain! What you have to realize is... he was a Cross Country runner for 1 1/2 years. He had the team and their parents behind him and the adrenaline kicked in. Could he do this everyday? Absolutely not! He has a hard enough time walking a couple blocks without tiring or pain. Carter has always had a high tolerance for pain and doesn't like to "quit" or be told "can't". He rarely will complain to anyone outside of our family, instead he will deal with the pain or numbness on his own. He just doesn't want to be "different".
What the outsiders don't see is....
Carter in pain after running not only in his feet, legs and knees but in his chest.
Carter in pain after trying to go to Six Flags with a friend. So much pain he couldn't walk anymore and slept for 15 hours.
Zach coming home sad because he is the last to be picked in PE.
Zach having to soak his feet in Epsom Salt to help his feet.
The bottom line is I am sure I am not the only mom, wife, sister, grandma, etc..out there there that has been presented with this statement. I am sure I will not be the last. I only hope that in the future more people are aware of the disease and the impact it has on people. Not everyone with CMT is affected the same way, some people need AFO's, some don't, some can run, some can't, some walk on their toes, some don't, the point is don't judge! It is a progressive disease!
Until Next Time...............TRY WALKING IN A CMTer'S SHOES JUST FOR A DAY THEN TELL ME HOW IT AFFECTS US!
P.S. sorry for rambling tonight just had to get it out!
"STAY STRONG, BELIEVE"
1. Because Zach has CMT he is a lot slower than his peers, trips over his own feet and doesn't jump well.
2. Zach has a hard time with shoes because of his arch, wide feet and sensory issues. Socks have to have no seam.
3. Zach has a hard time with homework because his hand tires quickly and cramps.
4. Carter has very high arches,hammer toes and he walks on his toes because of CMT.
5. Carter suffers from fatigue.
6. Carter gets pain in his feet, legs and knees. Sometimes so bad he has to lay down.
7. Carter cannot stand or walk for long periods without pain.
8. Carter also has a hard time with homework and taking notes because his hand tires quickly and cramps.
9. Carter's toes are numb and can cause him to get sores.
10. Buttoning shirts or trying to open jars is hard.
11. Carter had to change his school schedule because he cannot participate in Cross Country.
12. I can keep going but won't....
Can Carter run? Yes, he can but he is in pain the whole time. Did he run a mile in 5:31 on Saturday? Yes, he did but he did it in a lot of pain! What you have to realize is... he was a Cross Country runner for 1 1/2 years. He had the team and their parents behind him and the adrenaline kicked in. Could he do this everyday? Absolutely not! He has a hard enough time walking a couple blocks without tiring or pain. Carter has always had a high tolerance for pain and doesn't like to "quit" or be told "can't". He rarely will complain to anyone outside of our family, instead he will deal with the pain or numbness on his own. He just doesn't want to be "different".
What the outsiders don't see is....
Carter in pain after running not only in his feet, legs and knees but in his chest.
Carter in pain after trying to go to Six Flags with a friend. So much pain he couldn't walk anymore and slept for 15 hours.
Zach coming home sad because he is the last to be picked in PE.
Zach having to soak his feet in Epsom Salt to help his feet.
The bottom line is I am sure I am not the only mom, wife, sister, grandma, etc..out there there that has been presented with this statement. I am sure I will not be the last. I only hope that in the future more people are aware of the disease and the impact it has on people. Not everyone with CMT is affected the same way, some people need AFO's, some don't, some can run, some can't, some walk on their toes, some don't, the point is don't judge! It is a progressive disease!
Until Next Time...............TRY WALKING IN A CMTer'S SHOES JUST FOR A DAY THEN TELL ME HOW IT AFFECTS US!
P.S. sorry for rambling tonight just had to get it out!
"STAY STRONG, BELIEVE"
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