Can't believe September is already upon us! Awareness month is here! This year I decided to reach out to Governor Perry to ask for a proclamation on behalf of all those affected by Charcot Marie Tooth Disease. Well guess what? I got it! I am happy to report that here in Texas the month of September is officially Charcot Marie Tooth Awareness Month! Now is the time for us to take full advantage of this proclamation and get out there and make some noise!
This September is the first Awareness month that Carter won't be here with us. He is off at college.
Even though he won't be here with us to raise awareness in Texas, he will be helping to raise it in Kansas. He will be telling KU students about his and Zach's disease, passing out CMT and Carter's Challenge bracelets. He said he has already told some of the guys he lives with about it, since they were all asking about his bi-pap machine. He is making a difference just by discussing the disease with others who are completely unaware of the disease. There are several pre-meds at Pearson and they had never heard of it. Maybe, just maybe one of them will do a paper on CMT. Wouldn't that be sweet! They all were all intrigued by disease, how it progresses, what it affects and how it varies from person to person. They were all impressed with how Carter does not let the disease define him.
This month I will be blogging once a week to help raise awareness, share our journey with the CMT, raising kids with a disability and how to not let their circumstances define them. I hope that by blogging more about our story it will help not only raise awareness but help those in a similar situation.
Zach, Ayden and I will be raising awareness by passing out CMT and Carters Challenge bracelets, mailing out CMT postcards to friends and family, posting CMT posters all around town, wearing our CMT shirts and shoelaces and telling everyone and anyone about CMT.
Just remember you can raise awareness and make a difference just by telling your story. For those of you who are not affected by the disease I am asking you to tell at least 5 people about CMT.
What are you going to do to help raise awareness?
Until next time,
Stay Strong, Believe
Momma Hayes
Showing posts with label blog about Charcot Marie Tooth. Show all posts
Showing posts with label blog about Charcot Marie Tooth. Show all posts
Wednesday, September 3, 2014
Saturday, July 19, 2014
"BE STILL AND KNOW THAT I AM GOD" PSALM 46:10
This verse just keeps coming to me over and over again in my head. "Be still and know that I am God." Psalm 46:10. It sounds so easy to do, but in reality it just isn't. Especially when you feel like you are in a tornado, everything is spinning so fast and you just can't find a way out. When it seems like waves just keep crashing against you pushing you further and further away from the shore. I know this all sounds dark but honestly this is how I feel right now. I feel hopeless and defeated. I know He has a plan and its all in His time but honestly sometimes I want it on my time, on my terms.
I took a break from blogging again just because I had to spend time with my boys and not worry about what I was going to be posting next. Especially, with Carter leaving in...oh 4 weeks! I actually wasn't going to blog all summer, but then I realized I started this blog to help others. To show them that no matter what up hill battle they face, what season they are in, they can get through it. I can't help them if I am not sharing our own experiences with this horrible, rotten no good disease!
4 weeks ago I was laying with my 5 year old and rubbing his back to put him to sleep. He was having leg pain....the same leg pain Carter and Zach get. He was crying and begging me to make it stop. Inside my heart was just breaking, knowing that this is most likely a sign of the disease starting in him. Then I felt it...a small curve in his upper back between his shoulder blades. My heart sank again. All I wanted was for my boo bear to escape the wrath of this horrible, horrible disease! I remember crying out to God that night why? Why does he have to suffer too? Why do all 3 of my precious, sweet boys have to deal with this "monster". (side note I am stealing the word monster from my sweet neighbor who used it to describe her cancer)
Honestly, the next day I pushed all my fears into the back of my mind. I told myself there is no way this is happening, it was just growing pains and I was tired. Then the pain happened again and again. So to ease my worries I made an appointment with our neurologist. I did not tell anyone, not even his brothers. My worse nightmare seems to be coming true. She said "it looks like this is early signs of CMT" She said "without doing an NCV (nerve conduction velocity) and a EMG(electromyogram) or DNA test she cannot say 100% that he has it". But she said from the testing she did she would venture to guess he has it. I remember her saying "his legs show some signs of weakness, he has a small curvature in his spine, just like Carter, pain in the legs, and then the rest is like the sound of the teachers in Charlie Brown, blah blah....Then she finished with " all this leads me to believe he is starting to show signs of CMT". She suggested that I see our pediatrician and that we go to see Dr. I at Children's. She wants an x-ray of his back so we have a starting point and wants me to keep his muscles as strong as I can. I left the appointment feeling defeated.
A looks at me and says "mommy do I have what the brothers have?" It took everything in me to not cry, to not scream at the top of my lungs "NO!!!!" Please God NO" I did what any mom would do and tickled him and said "do you mean you have a tickle monster coming to get you? This along with an ice cream cone seemed to distract him. Just when you think you can't take anymore, somehow, someway you find the strength to push through it, for the sake of your kids. "Be still and know that I am God." Psalm 46:10 this was the first time I heard the verse in my head.
So now we are taking each day as it comes....trying to find our way out of the storm. Praying for a cure and hoping that A's CMT does not progress.
Remember, "STAY STRONG, BELIEVE"
Momma Hayes
I took a break from blogging again just because I had to spend time with my boys and not worry about what I was going to be posting next. Especially, with Carter leaving in...oh 4 weeks! I actually wasn't going to blog all summer, but then I realized I started this blog to help others. To show them that no matter what up hill battle they face, what season they are in, they can get through it. I can't help them if I am not sharing our own experiences with this horrible, rotten no good disease!
4 weeks ago I was laying with my 5 year old and rubbing his back to put him to sleep. He was having leg pain....the same leg pain Carter and Zach get. He was crying and begging me to make it stop. Inside my heart was just breaking, knowing that this is most likely a sign of the disease starting in him. Then I felt it...a small curve in his upper back between his shoulder blades. My heart sank again. All I wanted was for my boo bear to escape the wrath of this horrible, horrible disease! I remember crying out to God that night why? Why does he have to suffer too? Why do all 3 of my precious, sweet boys have to deal with this "monster". (side note I am stealing the word monster from my sweet neighbor who used it to describe her cancer)
Honestly, the next day I pushed all my fears into the back of my mind. I told myself there is no way this is happening, it was just growing pains and I was tired. Then the pain happened again and again. So to ease my worries I made an appointment with our neurologist. I did not tell anyone, not even his brothers. My worse nightmare seems to be coming true. She said "it looks like this is early signs of CMT" She said "without doing an NCV (nerve conduction velocity) and a EMG(electromyogram) or DNA test she cannot say 100% that he has it". But she said from the testing she did she would venture to guess he has it. I remember her saying "his legs show some signs of weakness, he has a small curvature in his spine, just like Carter, pain in the legs, and then the rest is like the sound of the teachers in Charlie Brown, blah blah....Then she finished with " all this leads me to believe he is starting to show signs of CMT". She suggested that I see our pediatrician and that we go to see Dr. I at Children's. She wants an x-ray of his back so we have a starting point and wants me to keep his muscles as strong as I can. I left the appointment feeling defeated.
A looks at me and says "mommy do I have what the brothers have?" It took everything in me to not cry, to not scream at the top of my lungs "NO!!!!" Please God NO" I did what any mom would do and tickled him and said "do you mean you have a tickle monster coming to get you? This along with an ice cream cone seemed to distract him. Just when you think you can't take anymore, somehow, someway you find the strength to push through it, for the sake of your kids. "Be still and know that I am God." Psalm 46:10 this was the first time I heard the verse in my head.
So now we are taking each day as it comes....trying to find our way out of the storm. Praying for a cure and hoping that A's CMT does not progress.
Remember, "STAY STRONG, BELIEVE"
Momma Hayes
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
Tuesday, October 11, 2011
Scottish Rite Visit and Life As I Know It Right Now
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
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
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
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
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!
Wednesday, August 31, 2011
Charcot Marie Tooth Awareness Month Is Here!
Tomorrow is September 1st and the start of CHARCOT MARIE TOOTH AWARENESS MONTH!!!!!
I know a lot of us have been so busy getting ready to raise awareness. I wanted to say some shout outs to some very special people who I think do an outstanding job raising awareness for Charcot Marie Tooth Disease.
- Kaitlyn and Lori Mattheis with Mission Happy Feet. This mother, daughter duo do such a great job getting the word out by making bracelets with feet on them, blogging, holding events, making videos and more! Way to go guys!
- Elizabeth Ouellette with Charcot Marie Tooth Association. I don't even know where to begin...She does it all! Videos, school events, public speaking, fundraising, and the list goes on. She volunteers for the CMTA and gives it everything she's got! Kudos Elizabeth!
- Melinda Lang with Living Well With CMT. Melinda has done some amazing things for CMT. Not only does she blog about it and hold fundraisers but she also received a CMT Awareness Month proclamation from the State Of New York and the City Of Albany!!!! Way to raise Awareness!
- Carol Liu with National CMT Resource Center. Wow this is all I can say about Carol. She like Elizabeth seems to do it all. Blog, tweet, editor in cheif for HNF, attorney, mom, oh and yeah wrote Arlene On the Scene. Like I said WOW!
I have made some great friendships so far in this journey, friends from all over the world! The CMT community is AMAZING! To my new friends Carly Andrews, Melissa Wilson Arakaki, Melissa Lykins you all have been a great support and have done wonderful things for CMT. Keep up the outstanding work!
Until Next Time.............."STAY STRONG, BELIEVE"
Monday, August 22, 2011
Are You Ready For The First Day Of School?
The boys start school tomorrow and to be honest I am really, really sad. I am not usually this emotional before school starts but this year I am. Maybe its because Carter is now a Sophomore, Zachy is in the 5th grade and Ayden is now in Preschool. Or maybe its because this year is different because of the CMT diagnosis. All I know is I feel more than ever that I am running out of time with them.
I know that the Charcot Marie Tooth disease is playing a big part in my emotions and anxiety. O.k. actually a lot. I fess up I am really worried about how this school year is going to really play out. I know Carter is strong and positive but how hard is this first day going to be for him? Is he going to miss Cross Country? Yes, I am sure. Is he going to have a hard time going up and down the stairs with all his books? Only time will tell. Marcus is such a big school and he counted that he will have to maneuver the stairs about 4 times a day. Of course, he says "no problem." The one and only thing that is our saving grace is the length of the classes. Each class is around an hour in a half. Plenty of time for his legs and feet to recover. O.k. I just convinced myself he will be fine.
With Zachy I am more concerned about PE. He always had a hard time doing certain activities in PE which sometimes would bring ridicule from others. See he is always the last to be picked for teams because he is slower, can't jump as high and trips a lot. I have always told him not to let it get to him and for the most part it doesn't. This year it will be interesting to see how the PE teacher handles his CMT. The old PE teacher used to really push Zach to run faster or stretch further. I think she thought he was lazy but really it was his CMT getting in the way. Since he was just diagnosed in July I made sure to inform the school of his disease. They have been so understanding and are willing to help in anyway they can. Zachy told me today that he is really going to try "extra hard" at PE. He said "I am going to show everyone that I can do what they can do!" I think Carter is rubbing off on him! Thank God!
Both boys have horrible writing and its due to the weakness in their hands. They tire easily when the write for long periods and cursive is super hard for Zach. The great news for us this year is our school district implemented a new technology initiative. It is called "Bring Your Own Technology" where kids are allowed to bring their cell phones, ipods, ipads and laptops! The schools are now supplied with a wifi system that will allow students to access the Internet to research information. What is so great about it for us is....the boys can take notes this way and they won't have to write as much. Well at least I am hoping. We will see... at least now I don't have to request a keyboard or laptop for them in school and have them stick out like a sore thumb. I'll keep you all posted on how it goes.
Well, thanks everyone for listening to me tonight. Just couldn't sleep needed to think this all through....Here's to a great school year for everyone. Remember to talk with your kids teachers, nurses and administrators about CMT, so they know what your child's limits are. You are your child's advocate, don't let them down. I know I am glad I went in before the school year started to inform everyone about Charcot Marie Tooth Disease. Did you?
Until Next Time..............Make sure your school knows about Charcot Marie Tooth Disease!
"Stay Strong, Believe"Carter Hayes
I know that the Charcot Marie Tooth disease is playing a big part in my emotions and anxiety. O.k. actually a lot. I fess up I am really worried about how this school year is going to really play out. I know Carter is strong and positive but how hard is this first day going to be for him? Is he going to miss Cross Country? Yes, I am sure. Is he going to have a hard time going up and down the stairs with all his books? Only time will tell. Marcus is such a big school and he counted that he will have to maneuver the stairs about 4 times a day. Of course, he says "no problem." The one and only thing that is our saving grace is the length of the classes. Each class is around an hour in a half. Plenty of time for his legs and feet to recover. O.k. I just convinced myself he will be fine.
With Zachy I am more concerned about PE. He always had a hard time doing certain activities in PE which sometimes would bring ridicule from others. See he is always the last to be picked for teams because he is slower, can't jump as high and trips a lot. I have always told him not to let it get to him and for the most part it doesn't. This year it will be interesting to see how the PE teacher handles his CMT. The old PE teacher used to really push Zach to run faster or stretch further. I think she thought he was lazy but really it was his CMT getting in the way. Since he was just diagnosed in July I made sure to inform the school of his disease. They have been so understanding and are willing to help in anyway they can. Zachy told me today that he is really going to try "extra hard" at PE. He said "I am going to show everyone that I can do what they can do!" I think Carter is rubbing off on him! Thank God!
Both boys have horrible writing and its due to the weakness in their hands. They tire easily when the write for long periods and cursive is super hard for Zach. The great news for us this year is our school district implemented a new technology initiative. It is called "Bring Your Own Technology" where kids are allowed to bring their cell phones, ipods, ipads and laptops! The schools are now supplied with a wifi system that will allow students to access the Internet to research information. What is so great about it for us is....the boys can take notes this way and they won't have to write as much. Well at least I am hoping. We will see... at least now I don't have to request a keyboard or laptop for them in school and have them stick out like a sore thumb. I'll keep you all posted on how it goes.
Well, thanks everyone for listening to me tonight. Just couldn't sleep needed to think this all through....Here's to a great school year for everyone. Remember to talk with your kids teachers, nurses and administrators about CMT, so they know what your child's limits are. You are your child's advocate, don't let them down. I know I am glad I went in before the school year started to inform everyone about Charcot Marie Tooth Disease. Did you?
Until Next Time..............Make sure your school knows about Charcot Marie Tooth Disease!
"Stay Strong, Believe"Carter Hayes
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