It is starting to hit me like a freight train, Carter will be leaving to go to college this time next year! To be honest it really started when Carter and I drove up to KU, University of Kansas, on May 2nd. Carter is looking at several colleges but he really does have a soft spot for KU now that we visited. It truly is beautiful up there and very hilly(which scares me with his CMT) shh don't tell him.:) BUT they have a great Med program, pharmacy program, full of traditions, cycling club (which we got to meet the president of) and they have a program that would help him if his CMT got real bad! Which really put my mind at ease.
Our KU admissions rep Jon did an outstanding job showing us around and really went the extra mile. He too was a pre-med student and actually knew about CMT!!!!! HUGE BONUS! He told us that they have a shuttle for students that break their leg or have a disability, were it will pick them up from their dorm and take them to their classes. Carter would give him/her his schedule and they would be there waiting for him and take him to his next destination! SUPER COOL! Plus they put in pathways all over campus that would allow him to get up the hill without using the stairs. Jon set it up so we did a campus tour, housing tour and he even drove us around campus and showed us downtown Lawrence. Overall, it was an amazing trip and we both fell in love with KU. I think I cried the whole time we were there! LOL I am such a baby when it comes to my baby.:)
Now we have 8 days left of the Junior year and we will be applying and visiting campuses all summer. Next stop is SFA (Stephen F Austin) which is here in Texas, no not in Austin, it is in Nacogdoches. It is about 4-4.5 hrs away so not too far from home. We will be visiting them the week of June 18th! We will let ya know how it goes! They too have a good pre-med program, cycling club and a really good physics and astronomy program. Carter wants to go to become a doctor, a general surgeon to be exact, so he is choosing physics as his major and astronomy as a possible minor. SFA has the second largest Observatory in Texas and the Central Time Zone! Pretty cool! Carter is really looking forward to the tour and he is very excited because his Nana will be taking him! Yep, my mom really wants to experience seeing her oldest grandson visit a college so she is flying in that week. Crazy cause she was just here on the week of May 7th, she came down before her visit to her oncologist in Louisiana. Anyway, we will see what he thinks of SFA.
Then we will be off to see the University of Arkansas. Which believe it or not is only 5-5.5 hours away. Not bad. They too have a great pre-med program, physics program and he knows people that go there and are looking to go there. So that would be nice. Plus they too have a cycling club and full of traditions too!
I know a lot of people think I am crazy for being so emotional and worrying but they don't have a child with a disease that has no cure and progresses. I know he will be fine cause that is just who he is. He doesn't give up, fights hard for what he wants and doesn't let his CMT get in the way. However, as a mom I worry about him being so far away from home and that his disease will progress. It has been pretty good but lately he is complaining more and more about his left leg. It is really tight and we have noticed that he is loosing muscle in his feet. Muscle atrophy in his feet and lower calf is progressing. Really hoping the stretches the physical therapist gave him and his leg braces will help. He is using the braces again and is able to wear them longer and longer as each day goes by. Praying they will help.
Of course do you think this is stopping him from planning his next triathlon? NO!!!! His swim coach is pushing him hard and he says it feels good in the pool, no pain. :) He wants to do one more tri this summer, we haven't found one yet that works into the schedule but I am sure he will find one.
We will keep you all posted on the college journey. Any advice from fellow CMTers?
Until Next Time..................Cherish the moments you have with you kids because time flies by so very fast and the next thing you know your sending them off to college! :(
Momma Hayes
"Stay Strong, Believe"~Carter Hayes
Showing posts with label charcot marie tooth disease. Show all posts
Showing posts with label charcot marie tooth disease. Show all posts
Tuesday, May 28, 2013
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
Friday, September 2, 2011
Local Teen Gives Speech On Charcot Marie Tooth Disease In Support Of Friend
I know my son has great friends who care about him and support him but I guess I never knew how dedicated some are. How some friends will take the time to learn about your disease and stand up to talk about it without even being asked. This is exactly what Brady Steele did.
We met the Steele family last summer when Carter started Marcus Cross Country. Adam, Brady's older brother and Carter quickly became instant BFF's and so did his mom and I (at least I think she is my BFF). Since Carter was always over there he and Brady naturally became friends as well. When Carter was diagnosed with CMT of course they were the first to find out. The Steele family quickly became our rock during these hard times. Adam and Brady always watching out for Carter, listening to him and supporting him through all of this. So I guess it shouldn't surprise me to find out from Kristi that Brady took matters in to his own hands.
Today, Brady gave a speech on Charcot Marie Tooth Disease in his leadership class in support of his friend, Carter. He could choose any topic to give a speech on and he chose to give a speech on Carter and CMT! WHAT A REMARKABLE YOUNG MAN! Brady knew that September was CMT Awareness Month since he posted it on his Facebook and he took action.
THANK YOU BRADY FOR RAISING AWARENESS FOR CMT! THANK YOU FOR BEING SUCH A GREAT FRIEND TO CARTER AND RISING UP TO THE OCCASION! WE ARE TRULY BLESSED TO HAVE YOU AND YOUR FAMILY IN OUR LIVES.
I of course cannot leave Adam out. Adam, Carter's BFF is doing his part too. He was the first to change his profile pic on Facebook to a CMT Awareness Avatar, posted about CMT Awareness on Facebook, stood by Carter Saturday night as he ran the mile, volunteering at our bake sale and more. He is always, always asking what he can do to help. What Adam doesn't realize is..... he is already doing the most important job, he is supporting his best friend just by being there for him when he needs him. THANK YOU! U KNOW WE LOVE YOU!
Until Next Time..................What are you doing to raise awareness?
"Stay Strong, Believe"~Carter Hayes
We met the Steele family last summer when Carter started Marcus Cross Country. Adam, Brady's older brother and Carter quickly became instant BFF's and so did his mom and I (at least I think she is my BFF). Since Carter was always over there he and Brady naturally became friends as well. When Carter was diagnosed with CMT of course they were the first to find out. The Steele family quickly became our rock during these hard times. Adam and Brady always watching out for Carter, listening to him and supporting him through all of this. So I guess it shouldn't surprise me to find out from Kristi that Brady took matters in to his own hands.
Today, Brady gave a speech on Charcot Marie Tooth Disease in his leadership class in support of his friend, Carter. He could choose any topic to give a speech on and he chose to give a speech on Carter and CMT! WHAT A REMARKABLE YOUNG MAN! Brady knew that September was CMT Awareness Month since he posted it on his Facebook and he took action.
THANK YOU BRADY FOR RAISING AWARENESS FOR CMT! THANK YOU FOR BEING SUCH A GREAT FRIEND TO CARTER AND RISING UP TO THE OCCASION! WE ARE TRULY BLESSED TO HAVE YOU AND YOUR FAMILY IN OUR LIVES.
I of course cannot leave Adam out. Adam, Carter's BFF is doing his part too. He was the first to change his profile pic on Facebook to a CMT Awareness Avatar, posted about CMT Awareness on Facebook, stood by Carter Saturday night as he ran the mile, volunteering at our bake sale and more. He is always, always asking what he can do to help. What Adam doesn't realize is..... he is already doing the most important job, he is supporting his best friend just by being there for him when he needs him. THANK YOU! U KNOW WE LOVE YOU!
Until Next Time..................What are you doing to raise awareness?
"Stay Strong, Believe"~Carter Hayes
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
Friday, August 19, 2011
Charcot Marie Tooth Association Is Making Carter The October Youth Spotlight!
We just got the official word that Carter will be the Youth Spotlight on the CMTA's Youth Facebook page, for October! He is so excited and so am I! I know they are excited to have him too. This is a great opportunity for Carter to tell and show other youths to stay strong, positive and believe. His motto. Don't give up! I was told that a PR person will be contacting us soon to go over everything. CAN YOU SAY AMAZING?
My head is still spinning from everything that is going on in our lives right now, but I know now more than ever that this is our calling. He and I are supposed to shed light on the Charcot Marie Tooth Disease and make more Doctors, nurses, moms, dads, teachers, communities,etc..aware of CMT and know the signs. So many have never heard of it or if they have, they don't know much about it. Remember, knowledge is power and power is knowing. THE TIME IS NOW....TIME TO TELL EVERYONE ABOUT CMT!
So go check Carter out on the CMTA's Youth Facebook page in October https://www.facebook.com/#!/CMTAssociation?sk=app_6009294086. I will of course remind you all when we get closer to October but just couldn't wait to share the great news.
Until Next Time..........You Can Achieve If You Believe!
Stay Strong, Believe~Carter Hayes
Wednesday, August 10, 2011
Cotton Patch Challenge
Carter's Challenge presented a challenge to all of you the other day. We asked you to email or tell 5 people about this website. Did you tell or email 5 people? Let us know by leaving a comment or email us.
Carter's first road race will be taking place on September 17th and 18th. He will be racing in the Cotton Patch Challenge in Greenville, Tx. The race begins at 7:55 am and is 31 miles long! Carter is so ecstatic about racing in his first race, his birthday week and when his Nana is in town. We would also like to invite all our friends and family to come cheer Carter on in his first race.
Carter has been training pretty hard for this race. He tries to cycle for 1-2 hours a day right now. He is not training outside since it is 105-111 here in Texas! The heat is just too much and we don't want him to get dehydrated or heat exhaustion. We have an indoor trainer that allows Carter to ride his bike inside and he can watch t.v. while riding so that is a plus.
So far Carter has done very well with his training on the bike. He hasn't had too much pain just every now and then he will get it in his knees, but his feet aren't bothering him at all! He of course is fatigued when he is done, but that is expected since fatigue is a huge problem with CMT patients. Plus riding for 1-2 hours can wear you out. Overall, he feels good when he is on the bike.
Please feel free to leave some encouraging comments for Carter to help him get through his training for the race. To all our CMT friends we have a question for you. Have you done a cycling race before? If so tell us about it we would love to hear about your experience and any tips you may have.
Carter's first road race will be taking place on September 17th and 18th. He will be racing in the Cotton Patch Challenge in Greenville, Tx. The race begins at 7:55 am and is 31 miles long! Carter is so ecstatic about racing in his first race, his birthday week and when his Nana is in town. We would also like to invite all our friends and family to come cheer Carter on in his first race.
Carter has been training pretty hard for this race. He tries to cycle for 1-2 hours a day right now. He is not training outside since it is 105-111 here in Texas! The heat is just too much and we don't want him to get dehydrated or heat exhaustion. We have an indoor trainer that allows Carter to ride his bike inside and he can watch t.v. while riding so that is a plus.
So far Carter has done very well with his training on the bike. He hasn't had too much pain just every now and then he will get it in his knees, but his feet aren't bothering him at all! He of course is fatigued when he is done, but that is expected since fatigue is a huge problem with CMT patients. Plus riding for 1-2 hours can wear you out. Overall, he feels good when he is on the bike.
Please feel free to leave some encouraging comments for Carter to help him get through his training for the race. To all our CMT friends we have a question for you. Have you done a cycling race before? If so tell us about it we would love to hear about your experience and any tips you may have.
Until Next Time......................"Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance, but you have to believe, and you have to fight." ~Lance Armstrong
Great News Just Keeps On Coming!
First of all I want to say Thank You so much to everyone who is reading this blog! Thanks for all the great emails that let us know you are thinking of us. Carter looks forward to reading the comments on the blog and checking the emails everyday, so keep them coming!
Sean's boss, Kirk at Bob Moore Subaru, called him tonight and told Sean he just received an email from his friend, who is the head legal counsel for Scottish Rite here in Dallas. The email stated that Kirk's friend's application for their two kids was reviewed today and IT WAS ACCEPTED! Yep, thanks to Kirk and his connections and Kim Bookout, our wonderful Pediatrician at 18 and Under MD, we got into Scottish Rite in record time! We should be hearing from them shortly! I cannot tell you all how much this means to us. We were so worried that we would not get in and that it would take a long time to hear from them. Now we don't have
I am sooo happy and excited! The last two days have been filled with such great news and I truly believe God is just watching over us right now. We are truly blessed to be surrounded by such incredible people. As soon as we here when our first appointment is I will let you all know.
Until Next Time.................THANK YOU EVERYONE!
Sean's boss, Kirk at Bob Moore Subaru, called him tonight and told Sean he just received an email from his friend, who is the head legal counsel for Scottish Rite here in Dallas. The email stated that Kirk's friend's application for their two kids was reviewed today and IT WAS ACCEPTED! Yep, thanks to Kirk and his connections and Kim Bookout, our wonderful Pediatrician at 18 and Under MD, we got into Scottish Rite in record time! We should be hearing from them shortly! I cannot tell you all how much this means to us. We were so worried that we would not get in and that it would take a long time to hear from them. Now we don't have
I am sooo happy and excited! The last two days have been filled with such great news and I truly believe God is just watching over us right now. We are truly blessed to be surrounded by such incredible people. As soon as we here when our first appointment is I will let you all know.
Until Next Time.................THANK YOU EVERYONE!
Tuesday, August 9, 2011
THE TIME IS NOW! JOIN US FOR SEPTEMBER CMT AWARENESS MONTH
The end of Charcot-Marie-Tooth disorder begins with me. Activate. Educate. Donate. I am a part of the CMTA.
TODAY'S CHALLENGE IS EMAIL AT LEAST 5 FRIENDS OUR BLOG ADDRESS
http://www.carterschallenge.com/ TO RAISE AWARENESS FOR CMT. HELP US FIND A CURE BY RAISING AWARENESS.
STAY TUNED FOR MORE INFO ON WHAT WE ARE DOING NEXT FOR CARTERS CHALLENGE!
TODAY'S CHALLENGE IS EMAIL AT LEAST 5 FRIENDS OUR BLOG ADDRESS
http://www.carterschallenge.com/ TO RAISE AWARENESS FOR CMT. HELP US FIND A CURE BY RAISING AWARENESS.
STAY TUNED FOR MORE INFO ON WHAT WE ARE DOING NEXT FOR CARTERS CHALLENGE!
It Takes One Teacher In A Child's Life To Make A Difference!
What an amazing day today. I never expected that today would be such a life changing day for Carter, but it did. This is all due to ONE AMAZING TEACHER- COLONEL SAYLES at Marcus High School in Flower Mound, Texas. As many of you know, Carter was in his High School's JROTC program and was looking forward to becoming a Navy Seal. All this changed when he was diagnosed with CMT. We went up to the school today to get his form for his permit to drive. When we arrived we bumped into his JROTC friends, who were "training" the new recruits. They all came running over and said "I am so sorry man to hear what happened." Carter told them all "Its o.k. I'll still come visit you all." After our goodbyes we went into the office to pick up the form and I could tell as he was signing it he was upset. He said "I didn't realize how hard this was going to be." He was talking about going back to school and being around all his friends that are doing everything he used to do but can no longer do. I told him "I know honey, I know it's hard but we will get through this." As we left we decided to stop in the class and inform Colonel that Carter is no longer going to be in JROTC.
When Carter told Colonel "I am here to tell you I am leaving ROTC." Colonel said "What? No you aren't. Why would you leave? This is what you have always wanted. You are not leaving!" We then explained to him that Carter was diagnosed right after he came back from ROTC Leadership camp with CMT. I explained what the disease was and how Carter can no longer stand for long periods of time due to severe pain, run due to pain and fatigue and that he just simply cannot handle some of the rigors of ROTC. Well lets just say that Colonel was not letting go of Carter that easily. He said "I am not letting you go, I want and need you to stay. You are my leader, I need you!" "You see all those Freshman out there?" "I need you to lead them." "ROTC is not just about joining the Military, it is about leadership, teamwork, and family." "I will make accommodations for you so you don't have to march or do drills." He went on to say that Carter can take on more of a leadership role, since he went to leadership camp and administrative work as well. He will teach him how to put stuff into the computer, he can time the PT guys and so much more. He kept telling him I need you and I am not letting you quit! I started to cry and everyone had tears welling up in their eyes. Going above and beyond Colonel also said that he can help us with fundraising! Even better he told Carter he could become a government contractor to do Military analysts or a strategist for the SEALS and he would help him with this. .
In my opinion Marcus High School should be honored to have such a great teacher leading their kids and the government should be proud and honored to have him as well. TODAY COLONEL SAYLES MADE OUR DAY! What started out as a sad day ended on such a high note! All due to one teacher, taking the time to care about one student and not giving up on him! Instead, inspiring him, teaching him, believing in him and telling him you are special.
THANK YOU COLONEL SAYLES for making this year a better year even before it starts.
Oh and at the end he said "So tomorrow I expect you here at 7 am in your BDU's." "Yes Sir" said Carter.
When Carter told Colonel "I am here to tell you I am leaving ROTC." Colonel said "What? No you aren't. Why would you leave? This is what you have always wanted. You are not leaving!" We then explained to him that Carter was diagnosed right after he came back from ROTC Leadership camp with CMT. I explained what the disease was and how Carter can no longer stand for long periods of time due to severe pain, run due to pain and fatigue and that he just simply cannot handle some of the rigors of ROTC. Well lets just say that Colonel was not letting go of Carter that easily. He said "I am not letting you go, I want and need you to stay. You are my leader, I need you!" "You see all those Freshman out there?" "I need you to lead them." "ROTC is not just about joining the Military, it is about leadership, teamwork, and family." "I will make accommodations for you so you don't have to march or do drills." He went on to say that Carter can take on more of a leadership role, since he went to leadership camp and administrative work as well. He will teach him how to put stuff into the computer, he can time the PT guys and so much more. He kept telling him I need you and I am not letting you quit! I started to cry and everyone had tears welling up in their eyes. Going above and beyond Colonel also said that he can help us with fundraising! Even better he told Carter he could become a government contractor to do Military analysts or a strategist for the SEALS and he would help him with this. .
In my opinion Marcus High School should be honored to have such a great teacher leading their kids and the government should be proud and honored to have him as well. TODAY COLONEL SAYLES MADE OUR DAY! What started out as a sad day ended on such a high note! All due to one teacher, taking the time to care about one student and not giving up on him! Instead, inspiring him, teaching him, believing in him and telling him you are special.
THANK YOU COLONEL SAYLES for making this year a better year even before it starts.
Oh and at the end he said "So tomorrow I expect you here at 7 am in your BDU's." "Yes Sir" said Carter.
Monday, August 8, 2011
This is from the NY Times great info!
http://well.blogs.nytimes.com/2011/03/31/the-voices-of-charcot-marie-tooth/
Well: The Voices of Charcot-Marie-Tooth
People with the neurological disorder called Charcot-Marie-Tooth must not only contend with pain and muscle weakness, but also the frustration of having a disease with a funny-sounding name that most people have never heard of.
Mice Point to a therapy for Charcot-Marie Tooth Disease
VIB researchers have developed a mouse model for Charcot-Marie-Tooth (CMT) neuropathy, a hereditary disease of the peripheral nervous system. They also found a potential therapy for this incurable disease. The treatment not only halted the damage to the nerves and the atrophy of the muscles, it even succeeded in reversing the symptoms. The research was conducted under supervision of Wim Robberecht en Ludo Van Den Bosch from VIB-K.U.Leuven, in collaboration with the team of Vincent Timmerman at VIB-University of Antwerp. The study was published in Nature Medicine.
CMT: a collection of neuropathies
Charcot-Marie-Tooth (CMT) disease is the name for a collection of hereditary disorders and affects approximately one in 2,500 individuals, making it the most common inherited disorder of the peripheral nervous system. CMT is characterized by loss of muscle tissue due to denervation and by sensory abnormalities, both predominantly in feet and legs but also in the hands and arms in advanced stages of the disease. Persons with CMT can be affected moderately to quite severely. It is presently not possible to cure or prevent CMT, which affects both children and adults. Research into the molecular biological process leading to CMT is important, because it contributes to the development of good diagnosis and offers possible treatments.
Earlier work by VIB researchers showed that some CMT patients have mutations in HSPB1, a gene coding for the 27 kDa small heat shock protein B1, a protein that plays a role in many stress-related molecular processes in the body. Until now, it was unclear how mutations in HSPB1 could lead to degeneration of the nerve bundles and to muscular weakness.
Mouse model for CMT
The core of the study by Constantin van Outryve d'Ydewalle consists of the construction of a mouse model for CMT. The researchers expressed the mutated human HSPB1 gene in mouse neurons. The mouse model develops motor symptoms, muscle atrophy and weakness, foot deformities and steppage gait, all very similar to symptoms observed in affected individuals. Furthermore, the mice develop sensory problems that also occur in CMT patients. Pathological examination of the nerves of the CMT mice shows that the contact between the nerve endings and muscles is disturbed.
Axonal transport deficits
The CMT mice provide the unique possibility to isolate and culture affected nerve cells, making it possible to investigate what exactly goes wrong in the sick nerves. It was discovered that the transport of mitochondria (the cellular power plants) within the axons is severely disturbed in the neurons from symptomatic CMT mice, most likely because the tracks along which the mitochondria are transported (microtubules) are damaged. This could lead to a chronic lack of sufficient mitochondria and other transported cargoes at the nerve endings, causing the nerves to degenerate.
Possible treatment of CMT by HDAC6 inhibitors
These new insights also open possibilities for treatment, because the mitochondrial transport in nerve fibers is known to be affected by tubulin deacetylation, a posttranslational modification of the building blocks of microtubules catalyzed by histone deacetylase 6 (HDAC6). Inhibitors of HDAC6 do not only reverse the axonal transport deficits in vitro, treatment of the CMT mice with HDAC6 inhibitors also halts the damage to the nerves and even succeeds in reversing the symptoms, most likely by muscle reinnervation. The most specific therapeutic molecule used in this study (Tubastatin A) was made by Alan Kozikowski from the University of Illinois at Chicago (USA).
Mouse medicine is not the same as human medicine
There is still a long way to go before these drugs will become available for patients. Many experimental drugs – even those that are successful in animal models – fail during clinical trials due to problems with safety or the lack of therapeutic effectiveness. Still, the results of this study are important not only because of the CMT mouse model that replicates the symptoms of the human disease; it also opens perspectives for possible new treatments of an incurable disease.
Other diseases?
Reduced axonal transport in neurons is also observed in other neurodegenerative or neurological diseases, opening the door for further investigations into the effects of this new therapeutic strategy in other diseases. Further scientific research is crucial to solve this issue.
Dr. Shy explains:
"This work was actually presented at the CMT Consortium in Maryland last month. The only thing is this for a rare form of axonal CMT CMT2F. EVENTUALLY, this type of therapeutic approach will be tested in this particular form of CMT. Whether the therapy will also be tested in other forms of CMT2 or other forms of CMT is only conjecture at the moment. Vincent Timmerman, who is involved with the CMTA and the CMTA's STAR initiative is involved in this work."
resource for article http://www.cmtausa.org/
Friday, August 5, 2011
No Limits!
Sorry everyone its been a few days since I posted but it has been sooooo crazy. What's new right? The boys are all doing well and are soo excited to be getting requests for the bracelets. We have now sent out about 40 bracelets and have given out about 20. I have been asked several times what does the green bracelet mean? I of course say CMT(Charcot Marie Tooth) and Carter's Challenge. I will say this has been such a great idea, I love being able to spread the word just by a bracelet.
This week Carter has been busy with Drivers Ed! Thanks Pa! He received a 90 on his first test and then he passed his other test, they didn't give us a score, but he now gets his permit!!!!! Woooo Hoooo! He is excited but nervous and I don't blame him. I remember I was sooo nervous when my dad took me out. I had to learn on a stick. I told Carter how my dad took me to a parking lot and made me start and stop on this huge hill in the Business Park. It was sooo nerve wrecking but after many hours of practice I never had problems with a clutch on a hill in S.F. What is cool about his Drivers Ed class is they get to use simulators. Carter says it is so fun, I guess he gets to drive at 90 mph on the game....just not in real life please....
Carter's 2nd appointment with his Physical Therapist went well. She said she now knows his limits and what works for him and what doesn't. She said it will be a work in progress. Carter does stretches for his toes against a wall, he works with bands to help his hamstrings and calves and does lots of other things to help his Achilles heal and ankle. It was funny cause I couldn't see him at one point, I had Ayden so we were up in the waiting area, but I heard Alise say to him "Carter I can see you, you are cheating!" She then told her assistant to help him since he's a cheater! LOL. I guess when he does some of his stretches with the bands, his feet tend to go outward and he needs to keep them neutral. He also got his first taste of electrical stimulation, which is were they stick electrodes on your skin to contract certain muscles. This helps strengthen the muscles and brings blood to the those muscles to help them heal faster. I guess when he was getting this done she kept asking Carter "Can you feel it or are you numb?" Apparently, he said he was numb so she had to keep raising the level up! He said after raising it several times she was finally able to get the muscle to contract. Carter said it was really funny because she kept looking at him like are you o.k. and he would laugh and smile at her.
So she told us that he needs to do his exercises everyday no matter what, even if he is at a friends house. Which is exactly what happened yesterday and today. I guess he is keeping his word and following through with it.
Yesterday, Carter and Carson left our house and said they were going on a walk. Well that was at 7pm, I get a call at 9:45 from Carter, Tyler and Carson telling me "Ma! We are at Chicken Express! My phone is dead so I thought I should call you so you don't freak out." I said "Too late." At least they called....then I get a call at 11:45 saying we are at Tylers house and I am spending the night. Come to find out that they had walked from Chicken Express back to Tylers house and around Castle Park, it is a pretty good distance from our house. Carter said his knees hurt and his feet hurt but he kept on going. It took about 45 minutes for the pain to go away but at least it did. I told him today, no walking or running!
As for Zachy, he has had a great week. He has been staying cool in the pool! I am soooo glad that he loves swimming since it is one of the best things for his CMT. We also went to Scottish Rite on Tuesday to get the results of his learning tests. We arrived at 9:25 and didn't get out of there until after 2! It was a great meeting but of course more work for me. I met with the head Dr. and another Dr. for 3 hours and went over all the results. Bottom line, Zach has ADHD. She said he is "consistantly, inconsistant" with his work. He is very smart but his ADHD is getting in the way. She told me I will have to work a lot with Zach on getting him into different routines and I will need to get the school to make some adjustments to his IEP plan. She really wants him to be able to use a keyboard in school since his handwriting is so bad due to the ADHD and his CMT. I also have to get 3 different books on raising a child with ADHD and one book for Zach on what it is like to have ADHD. She told me to read up on it and get him in to see his Dr. so we can get him on a medication that will work best for him. Long story short, I need to make chore charts, house rules, daily charts...charts, charts and more charts. All so he can be visually reminded. She said I might have to repeat myself a couple of times. Oh and I have to have lots of patience too. Um, Houston we might have a problem....I don't have a lot of patience. I guess I will have to try harder...
On Wednesday Zach went to the Urologist and that was a interesting visit. It was at Children's Hospital in Plano and we were the first patient of the day! Love it! We did not have to wait and the visit was all about him. She first started with an ultrasound of his bladder full, then they had Zach empty his bladder and did another one. Good news is his bladder did empty almost completely. Then we went on to some not so fun stuff. A series of questions that no one likes to talk about....yep you guessed it, poop. She pulled out the handy dandy "stool chart" which is basically like a police lineup where you pick the bad guy. Anyway, after discussing this they took another ultrasound to see if his bladder was filling up like it should and if there was anything else going on. His bladder wall looks great and so does his bladder, the only thing is his colon is pushing on his bladder and this could be the issue. What do we do about it? We make sure to go to the restroom every 3 hours, drink only 2 cups of milk a day, lots of water, lots of fiber and more. I found out that Zach has been told he cannot use the restroom during the day at school because they are in the middle of a lesson plan or something. The teachers ask him "Is it a dire emergency?" The doctor flipped out and said "Yes, for you it is a dire emergency." She wrote a letter to the school telling them if he needs to use the restroom they must let him every 2 hours for medical purposes. I check back in with her in two weeks to see if there is any improvement with him and then take it from there.
Overall, pretty good week, just super busy. I am a little overwhelmed at this point now that I have to research ADHD too. But we do what we have to do to take care of our kids. I have been super busy designing the logo for Carters Challenge and think I am done. We will be trying to find someone to help us with it and load it onto the web. If you know anyone that could do it for free please let me know. We are trying to get all this done asap since big things are going to be coming in September! There will be more on this next time. Be prepared to help with CMT awareness. Each and everyone of you will be asked to help.
Until Next Time...........................Charcot Marie Tooth Disease-Funny Name, Serious Disease!
This week Carter has been busy with Drivers Ed! Thanks Pa! He received a 90 on his first test and then he passed his other test, they didn't give us a score, but he now gets his permit!!!!! Woooo Hoooo! He is excited but nervous and I don't blame him. I remember I was sooo nervous when my dad took me out. I had to learn on a stick. I told Carter how my dad took me to a parking lot and made me start and stop on this huge hill in the Business Park. It was sooo nerve wrecking but after many hours of practice I never had problems with a clutch on a hill in S.F. What is cool about his Drivers Ed class is they get to use simulators. Carter says it is so fun, I guess he gets to drive at 90 mph on the game....just not in real life please....
Carter's 2nd appointment with his Physical Therapist went well. She said she now knows his limits and what works for him and what doesn't. She said it will be a work in progress. Carter does stretches for his toes against a wall, he works with bands to help his hamstrings and calves and does lots of other things to help his Achilles heal and ankle. It was funny cause I couldn't see him at one point, I had Ayden so we were up in the waiting area, but I heard Alise say to him "Carter I can see you, you are cheating!" She then told her assistant to help him since he's a cheater! LOL. I guess when he does some of his stretches with the bands, his feet tend to go outward and he needs to keep them neutral. He also got his first taste of electrical stimulation, which is were they stick electrodes on your skin to contract certain muscles. This helps strengthen the muscles and brings blood to the those muscles to help them heal faster. I guess when he was getting this done she kept asking Carter "Can you feel it or are you numb?" Apparently, he said he was numb so she had to keep raising the level up! He said after raising it several times she was finally able to get the muscle to contract. Carter said it was really funny because she kept looking at him like are you o.k. and he would laugh and smile at her.
So she told us that he needs to do his exercises everyday no matter what, even if he is at a friends house. Which is exactly what happened yesterday and today. I guess he is keeping his word and following through with it.
Yesterday, Carter and Carson left our house and said they were going on a walk. Well that was at 7pm, I get a call at 9:45 from Carter, Tyler and Carson telling me "Ma! We are at Chicken Express! My phone is dead so I thought I should call you so you don't freak out." I said "Too late." At least they called....then I get a call at 11:45 saying we are at Tylers house and I am spending the night. Come to find out that they had walked from Chicken Express back to Tylers house and around Castle Park, it is a pretty good distance from our house. Carter said his knees hurt and his feet hurt but he kept on going. It took about 45 minutes for the pain to go away but at least it did. I told him today, no walking or running!
As for Zachy, he has had a great week. He has been staying cool in the pool! I am soooo glad that he loves swimming since it is one of the best things for his CMT. We also went to Scottish Rite on Tuesday to get the results of his learning tests. We arrived at 9:25 and didn't get out of there until after 2! It was a great meeting but of course more work for me. I met with the head Dr. and another Dr. for 3 hours and went over all the results. Bottom line, Zach has ADHD. She said he is "consistantly, inconsistant" with his work. He is very smart but his ADHD is getting in the way. She told me I will have to work a lot with Zach on getting him into different routines and I will need to get the school to make some adjustments to his IEP plan. She really wants him to be able to use a keyboard in school since his handwriting is so bad due to the ADHD and his CMT. I also have to get 3 different books on raising a child with ADHD and one book for Zach on what it is like to have ADHD. She told me to read up on it and get him in to see his Dr. so we can get him on a medication that will work best for him. Long story short, I need to make chore charts, house rules, daily charts...charts, charts and more charts. All so he can be visually reminded. She said I might have to repeat myself a couple of times. Oh and I have to have lots of patience too. Um, Houston we might have a problem....I don't have a lot of patience. I guess I will have to try harder...
On Wednesday Zach went to the Urologist and that was a interesting visit. It was at Children's Hospital in Plano and we were the first patient of the day! Love it! We did not have to wait and the visit was all about him. She first started with an ultrasound of his bladder full, then they had Zach empty his bladder and did another one. Good news is his bladder did empty almost completely. Then we went on to some not so fun stuff. A series of questions that no one likes to talk about....yep you guessed it, poop. She pulled out the handy dandy "stool chart" which is basically like a police lineup where you pick the bad guy. Anyway, after discussing this they took another ultrasound to see if his bladder was filling up like it should and if there was anything else going on. His bladder wall looks great and so does his bladder, the only thing is his colon is pushing on his bladder and this could be the issue. What do we do about it? We make sure to go to the restroom every 3 hours, drink only 2 cups of milk a day, lots of water, lots of fiber and more. I found out that Zach has been told he cannot use the restroom during the day at school because they are in the middle of a lesson plan or something. The teachers ask him "Is it a dire emergency?" The doctor flipped out and said "Yes, for you it is a dire emergency." She wrote a letter to the school telling them if he needs to use the restroom they must let him every 2 hours for medical purposes. I check back in with her in two weeks to see if there is any improvement with him and then take it from there.
Overall, pretty good week, just super busy. I am a little overwhelmed at this point now that I have to research ADHD too. But we do what we have to do to take care of our kids. I have been super busy designing the logo for Carters Challenge and think I am done. We will be trying to find someone to help us with it and load it onto the web. If you know anyone that could do it for free please let me know. We are trying to get all this done asap since big things are going to be coming in September! There will be more on this next time. Be prepared to help with CMT awareness. Each and everyone of you will be asked to help.
Until Next Time...........................Charcot Marie Tooth Disease-Funny Name, Serious Disease!
Wednesday, July 27, 2011
Better Day Today---All caught up July 27th
I will say that Monday was just a rough day for me and I was mad. Tuesday was an emotional day and I cried. I mean I cried and cried and cried. I actually think it helped me because today I feel back to normal and I am focused.
So yesterday I was told by Aetna, our lovely insurance, that they will not cover Carter's prosthetics or orthotics. She asked me "Does he have Diabetes?" I said "No, he has Charcot-Marie-Tooth-Disease. This disease slowly causes deterioration of the nerves and muscles." The lady said "Oh I am sorry, but its not covered unless he has Diabetes." I could not believe that they would not cover it. I don't understand how someone with Diabetes can get them covered, especially when not everyone with Diabetes has there legs or feet affected. Yet, someone with a disease that definitely causes difficulties walking, feet deformities and pain does not qualify! This is absurd!
Then I call the Physical Therapy office the ortho recommended and got all excited when I said "My sons have Charcot.." and she finished my sentence for me. She knew about the disease! AMAZING! They are actually treating a 3 yr old little boy with CMT! I thought awesome they know how to treat the disease, this is perfect. Well think again, Michelle. When I told her we had Aetna she said "I am so sorry Aetna HMO does not have us as a provider." So once again, I am being shot down by Aetna! The lady, Amy, was kind enough to go onto Aetna's website and find one for me locally. She even asked around the office to make sure they would be able to handle CMT. Which I thought was going way above the call of duty. Thanks Amy! So we are going to regular Physical Therapist not a Pediatric one but they have heard of the disease they just have not treated anyone. So we will see. Oh and Aetna makes us pay $50.00 every time we go! So every time I take Zach and Carter its $100.00! So we will see. I have them scheduled for evaluation on Monday and then we will take it from there.
Carter has an appointment on Monday for his Orthotics! The company does the evaluation for free! Bonus! Plus, they were kind enough to give us a discount since Aetna will not cover it at all. She felt bad and talked with the someone there and they are nice enough to give us a pretty good deal. We will see how much they are on Monday.
Mr. Zachy goes in for his EMG on Friday. He is extremely nervous about it and to tell you the truth so am I. He hates needles, so this will be interesting to say the least. I will definitely update you all to know how it went.
So here is another odd story for you. My dad's employee, Jen, came in to his office yesterday and told him while she was getting her nails done at her usual salon, she had something weird happen. She saw a lady that had a sweater on and underneath her sweater she could see some writing on a shirt. Jen asked the lady "What does your shirt say." The lady said "Here let me show you." She took the sweater off and revealed her shirt that said "Ask me about Charcot-Marie-Tooth-Disease." Jen's mouth probably hit the floor when she saw that. She told the lady this is so strange because I had never heard of the disease before my boss told me the other week he has a grandson who has it. This lady apparently has an 11 yr old with CMT and she found out when he was in the womb! Jen is gonna help me get in touch with her since she has a foundation and I want to start one. Crazy huh? It's just weird how Jen asked the lady what does your shirt say? It was meant to be is how I look at it.
Well I am off to make some more calls. I am hoping to get the bracelet's in by next week so be looking for yours in the mail or shoot Carter an email so we know you want one.
Until next time.............xo
So yesterday I was told by Aetna, our lovely insurance, that they will not cover Carter's prosthetics or orthotics. She asked me "Does he have Diabetes?" I said "No, he has Charcot-Marie-Tooth-Disease. This disease slowly causes deterioration of the nerves and muscles." The lady said "Oh I am sorry, but its not covered unless he has Diabetes." I could not believe that they would not cover it. I don't understand how someone with Diabetes can get them covered, especially when not everyone with Diabetes has there legs or feet affected. Yet, someone with a disease that definitely causes difficulties walking, feet deformities and pain does not qualify! This is absurd!
Then I call the Physical Therapy office the ortho recommended and got all excited when I said "My sons have Charcot.." and she finished my sentence for me. She knew about the disease! AMAZING! They are actually treating a 3 yr old little boy with CMT! I thought awesome they know how to treat the disease, this is perfect. Well think again, Michelle. When I told her we had Aetna she said "I am so sorry Aetna HMO does not have us as a provider." So once again, I am being shot down by Aetna! The lady, Amy, was kind enough to go onto Aetna's website and find one for me locally. She even asked around the office to make sure they would be able to handle CMT. Which I thought was going way above the call of duty. Thanks Amy! So we are going to regular Physical Therapist not a Pediatric one but they have heard of the disease they just have not treated anyone. So we will see. Oh and Aetna makes us pay $50.00 every time we go! So every time I take Zach and Carter its $100.00! So we will see. I have them scheduled for evaluation on Monday and then we will take it from there.
Carter has an appointment on Monday for his Orthotics! The company does the evaluation for free! Bonus! Plus, they were kind enough to give us a discount since Aetna will not cover it at all. She felt bad and talked with the someone there and they are nice enough to give us a pretty good deal. We will see how much they are on Monday.
Mr. Zachy goes in for his EMG on Friday. He is extremely nervous about it and to tell you the truth so am I. He hates needles, so this will be interesting to say the least. I will definitely update you all to know how it went.
So here is another odd story for you. My dad's employee, Jen, came in to his office yesterday and told him while she was getting her nails done at her usual salon, she had something weird happen. She saw a lady that had a sweater on and underneath her sweater she could see some writing on a shirt. Jen asked the lady "What does your shirt say." The lady said "Here let me show you." She took the sweater off and revealed her shirt that said "Ask me about Charcot-Marie-Tooth-Disease." Jen's mouth probably hit the floor when she saw that. She told the lady this is so strange because I had never heard of the disease before my boss told me the other week he has a grandson who has it. This lady apparently has an 11 yr old with CMT and she found out when he was in the womb! Jen is gonna help me get in touch with her since she has a foundation and I want to start one. Crazy huh? It's just weird how Jen asked the lady what does your shirt say? It was meant to be is how I look at it.
Well I am off to make some more calls. I am hoping to get the bracelet's in by next week so be looking for yours in the mail or shoot Carter an email so we know you want one.
Until next time.............xo
And Then There Were 2----July 25th
Hmmm...Having a hard time even coming up with the words for what I am about to write. A couple of words come to mind, unbelievable, unreal and words that I simply cannot put on my blog. I NEVER in a million years thought that any one of my kids would become ill or have anything serious happen to them. I think we all think and hope for that. So, when I was told Carter had CMT I was devastated and thought this is unbelievable this cannot be happening! Well it did and guess what? Zachary has it too! Yep, cannot believe I am typing these words right now but it is true. How do I feel about it....IT SUCKS! I AM PISSED OFF to be honest! I can kind of understand one child but two? Seriously?
Zach went to see Dr. Brown, the Orthopedic Dr, today and after his exam he said "I am so sorry, Zach has CMT too." He doesn't have the same symptoms of Carter or such severe deformities but he has it. He has the high arch, foot drop, tight calves and hamstrings. His feet point inward and he walks on the insides of his feet. This is due to his ankle being weak. Carter's ankle muscle is just toast. He told me since Zach is only ten we will probably see him start to walk on his toes by the time he is Carter's age. He does not know if Zach will get the hammer toes too or the numbness since each person's symptoms are different. He did say he wants him to start on the Physical Training immediately due to his tightness in the leg muscles. Zach will also get the EMG test done sometime within the next week and then he will see the same Neurologist as Carter.
How does Zach feel about all this? He took it pretty hard at first. On the way home he started to cry. He said "Momma, I don't want to have this disease. I don't want it! Make it go away!" I told Zach "Until the day I die, until my last breath, I will search for a cure for you and your brother. That much I can promise!" But as I said those words to him I just kept thinking to myself, am I? Am I going to be able to find a cure? I don't know if in my lifetime I will but I will tell you all one thing, I am for sure gonna die trying. Why does this stupid disease have to be taking over our lives? Why couldn't it have just been Carter? Why both of them and is this going to happen to Ayden too? Of course, I don't have the answers to these questions either. I just know that as their mother I have to try. Try to find a cure, support research, spread the word, pick them up when they fall, encourage them when they don't want to be encouraged, listen with "open" ears, stay positive and BELIEVE!
I have some questions for all of you? Are you willing to help spread awareness? Will you tell 3 friends about this disease so they can tell 3 and so on and so on? Tell everyone you know about CMT and give them this website so they can learn about the disease and our journey. HELP SPREAD CMT AWARENESS! WE ARE GOING TO FIND A CURE ONE STEP AT A TIME!
Until next time..........May God Bless Us All xo
Zach went to see Dr. Brown, the Orthopedic Dr, today and after his exam he said "I am so sorry, Zach has CMT too." He doesn't have the same symptoms of Carter or such severe deformities but he has it. He has the high arch, foot drop, tight calves and hamstrings. His feet point inward and he walks on the insides of his feet. This is due to his ankle being weak. Carter's ankle muscle is just toast. He told me since Zach is only ten we will probably see him start to walk on his toes by the time he is Carter's age. He does not know if Zach will get the hammer toes too or the numbness since each person's symptoms are different. He did say he wants him to start on the Physical Training immediately due to his tightness in the leg muscles. Zach will also get the EMG test done sometime within the next week and then he will see the same Neurologist as Carter.
How does Zach feel about all this? He took it pretty hard at first. On the way home he started to cry. He said "Momma, I don't want to have this disease. I don't want it! Make it go away!" I told Zach "Until the day I die, until my last breath, I will search for a cure for you and your brother. That much I can promise!" But as I said those words to him I just kept thinking to myself, am I? Am I going to be able to find a cure? I don't know if in my lifetime I will but I will tell you all one thing, I am for sure gonna die trying. Why does this stupid disease have to be taking over our lives? Why couldn't it have just been Carter? Why both of them and is this going to happen to Ayden too? Of course, I don't have the answers to these questions either. I just know that as their mother I have to try. Try to find a cure, support research, spread the word, pick them up when they fall, encourage them when they don't want to be encouraged, listen with "open" ears, stay positive and BELIEVE!
I have some questions for all of you? Are you willing to help spread awareness? Will you tell 3 friends about this disease so they can tell 3 and so on and so on? Tell everyone you know about CMT and give them this website so they can learn about the disease and our journey. HELP SPREAD CMT AWARENESS! WE ARE GOING TO FIND A CURE ONE STEP AT A TIME!
Until next time..........May God Bless Us All xo
Don't Worry Cause Every Little Thing Is Gonna Be Alright! July 22nd
The title is what I keep saying to myself, I am not a huge Bob Marley fan...the words to his song just seem to fit with how I am feeling today. I know that there will be good days and bad days, happy and sad days and days when you just want to wish it all away. Today was one of those days. As I said earlier this week, we took the week off from appointments so Carter and the rest of us could have a break from the craziness. I knew I would get calls here and there from his Doctors but I honestly didn't think that I would one get a call from an assistant and get scolded & yelled at. Yep, you read it correctly, I actually felt like I was a child being repremended by my parents! See Carter, was scheduled for a Stress EKG today, July 22nd, and I knew that after a day at Six Flags he wouldn't be able to do it. I cld and left her a message saying I needed to reschedule. She calls today precedes to tell me I am wasting there time that I keep having to reschedule and now I won't be able to get in for a couple of weeks! I said "I am sorry, but my child is ill and we have had to reschedule before because he had other tests that had to be run and as for today he physically cannot do a stress test." She said "What do you mean he can't do it! He can and he should have I don't understand why he can't do it!" I told her that he has Charcot Marie Tooth Disease and yesterday he was in a lot of pain and there was just no way I was going to make him try and run today." Can you believe she said to me "What is Shark whatever, I have never heard of it before. That is no excuse for not coming to a scheduled appointment again!" I told her the name again and said "You won't have to worry about me rescheduling because I will no longer be using your Doctor and his Pediatrician will be hearing about this horrible experience!" I hung up and thought WOW did that really just happen?
Then I get a call from his Ortho's assistant letting me know that she spoke with Dr. Brown and he wants to go over foot surgery with Carter and I on August 25th. She said he believes that Carter will need 3-5 surgeries per foot but that we will go over everything at the appointment. I asked her a couple of questions about the surgeries and she answered as much as she could. She said that recovery time is around 6 months, he will be in casts for awhile and that we should think about doing it over xmas break. So I will update you all once I speak to the Dr. on the 25th of Aug.
Carter went to Six Flags yesterday with his BF Parker from Idaho! They had a blast and went on the Texas Giant 4 times! He was exhausted though when he came home and said his feet, ankles and legs hurt. I knew he would probably hurt after a day on his feet but I also knew that this would be a great memory for him and Parker!
Just like the title says "Every little thing is gonna be alright!"
Remember it just takes you sharing this website with one person and they share it with someone else and so on and so on. This is how we spread awareness and get help finding a cure! THIS IS A HEREDITARY DISEASE! Someone you love could have this and might not even know it but now you know what to look for.
High arches
falls alot or trips a lot,
hammertoes
Foot drop
"inverted champagne bottle" legs
skinny calves
high step gait
pain in feet or legs or hands
Know these signs so you can help.
P.S. Special thanks to Momma Charla today, she must have had esp because she called right when I needed it. She picked me up and dusted me off! Much Much Love! XO
AS CARTER SAYS "STAY POSITIVE AND BELIEVE"
Then I get a call from his Ortho's assistant letting me know that she spoke with Dr. Brown and he wants to go over foot surgery with Carter and I on August 25th. She said he believes that Carter will need 3-5 surgeries per foot but that we will go over everything at the appointment. I asked her a couple of questions about the surgeries and she answered as much as she could. She said that recovery time is around 6 months, he will be in casts for awhile and that we should think about doing it over xmas break. So I will update you all once I speak to the Dr. on the 25th of Aug.
Carter went to Six Flags yesterday with his BF Parker from Idaho! They had a blast and went on the Texas Giant 4 times! He was exhausted though when he came home and said his feet, ankles and legs hurt. I knew he would probably hurt after a day on his feet but I also knew that this would be a great memory for him and Parker!
Just like the title says "Every little thing is gonna be alright!"
Remember it just takes you sharing this website with one person and they share it with someone else and so on and so on. This is how we spread awareness and get help finding a cure! THIS IS A HEREDITARY DISEASE! Someone you love could have this and might not even know it but now you know what to look for.
High arches
falls alot or trips a lot,
hammertoes
Foot drop
"inverted champagne bottle" legs
skinny calves
high step gait
pain in feet or legs or hands
Know these signs so you can help.
P.S. Special thanks to Momma Charla today, she must have had esp because she called right when I needed it. She picked me up and dusted me off! Much Much Love! XO
AS CARTER SAYS "STAY POSITIVE AND BELIEVE"
Tuesday, July 19, 2011 2:22 PM, CDT
Week Off!
I decided to let Carter take a break from the Doctors this week. I can tell all the Dr. appointments and being poked at is getting to him. We did have a stress EKG set up for Fri but I am going to move it until next week. Right now we are waiting for the results to come back from last Friday's EMG test. The Dr. did say he believes he has Axonal CMT and it is rare. It just figures everything with Carter has always been rare or different, he can never be the "norm". Ever since he was in the womb! So as for now nothing new to update as far as Dr. appointments or results. He has now posted on his facebook about the disease and is getting a ton of support from his friends. I will say he has done an outstanding job in choosing his friends. They all want to help and are praying for him. They all want us to get T-Shirts made up for them to wear in support. So this is on my to do list. I have already talked to a couple of people about it. We did get the bands made and hopefully those will be here in a week or two. He and his friends are all excited about it. If you would like one please feel free to leave him a message on the guest book about it. I am not sure if everyone knows about the guest book or not. It is a place that you can leave messages for Carter. Inspiring Quotes, suggestions, words of encouragement, hellos and so forth. I am sure you all get it. Well off to go clean! He is off to play xbox! Again! LOL.
Until Next Time......
Michelle and Carter
Until Next Time......
Michelle and Carter
Friday, July 15, 2011 8:45 PM, CDT
Inspire
The last 2 days have had there ups and there downs. I can tell you one thing I have learned through this is that, Carter is someone that I inspire to be like. I wish I had just a smidgen of the positivity he has. Through all of this he has stayed positive and has a great sense of humor about the whole thing. There was a quote on one of my blogs that I just fell in love with the other day and wanted to put it on here. I love it and believe it whole heartily.
"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you are supposed to be." --Joan Ryan
OK. enough of the sappy stuff....Bottom line right now is Dr. Naylor said we are in a waiting game as far as Lymphoma or anything to do with the lymph nodes. The reason being is his latest blood test from Tuesday came back pretty normal. The immature white cells matured an went away. All other lab work as well came back pretty good and he gained some weight! He is at 117! The nurses and I were laughing because who would have ever thought you'd be so happy to see someone gain weight? Dr. Naylor and the oncologist looked at his Chest CT Scan and found one lymph node on his left side in his chest wall that is "inflamed" but not to much to be concerned with. Especially since they cannot feel the other node any longer. They do want to keep an eye on his nodes, cough, fatigue and weight. Because the steroids the ER gave him could have put him into "remission" if he has lymphoma. So basically, we will go back in 5 weeks and redo full cbc and some other markers to see if anything spikes again. If he starts to loose weight again rapidly, more nose bleeds, fever, cough gets worse, call in immediately. As she told Carter "When you come back in I don't want to see any large nodes, no fever, no cough and you better get fatter!" LOL.
Today July 15th we went in for the EMG test (nerve testing). I will say so far this has been the most difficult thing for me as a parent. Watching you child get shocked and needles put into him is not fun. There was a point when he had a needle in his right knee and shocked Carter 3 times in a row that I could see his leg move and Carter looked up at me and said "That one hurt". I would not wish this on anyone ever! He was such a trooper and the Dr. told him he is going to win patient of the year award! He couldn't believe how well he did. I will say the Dr. was very kind and told us about everything before he did it. He warned Carter as to when the shock would happen and made sure he was o.k. He believes that to get a diagnosis you don't have to "torture your patients". After the first couple of shocks Carter said to us " I feel like Electro Man!" We laughed and then a little later on the Dr. asked how are you doing? Carter said " Good. I am having a shocking experience today!" Dr. Flores said "Your stealing all my good lines." Carter laughed and said " This is such an electrifying day!" So despite being electrocuted and having needles put in him, he still found his sense of humor and made lemon aide out of lemons. This is why he INSPIRES ME!
Until Next time...........Believe........
"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you are supposed to be." --Joan Ryan
OK. enough of the sappy stuff....Bottom line right now is Dr. Naylor said we are in a waiting game as far as Lymphoma or anything to do with the lymph nodes. The reason being is his latest blood test from Tuesday came back pretty normal. The immature white cells matured an went away. All other lab work as well came back pretty good and he gained some weight! He is at 117! The nurses and I were laughing because who would have ever thought you'd be so happy to see someone gain weight? Dr. Naylor and the oncologist looked at his Chest CT Scan and found one lymph node on his left side in his chest wall that is "inflamed" but not to much to be concerned with. Especially since they cannot feel the other node any longer. They do want to keep an eye on his nodes, cough, fatigue and weight. Because the steroids the ER gave him could have put him into "remission" if he has lymphoma. So basically, we will go back in 5 weeks and redo full cbc and some other markers to see if anything spikes again. If he starts to loose weight again rapidly, more nose bleeds, fever, cough gets worse, call in immediately. As she told Carter "When you come back in I don't want to see any large nodes, no fever, no cough and you better get fatter!" LOL.
Today July 15th we went in for the EMG test (nerve testing). I will say so far this has been the most difficult thing for me as a parent. Watching you child get shocked and needles put into him is not fun. There was a point when he had a needle in his right knee and shocked Carter 3 times in a row that I could see his leg move and Carter looked up at me and said "That one hurt". I would not wish this on anyone ever! He was such a trooper and the Dr. told him he is going to win patient of the year award! He couldn't believe how well he did. I will say the Dr. was very kind and told us about everything before he did it. He warned Carter as to when the shock would happen and made sure he was o.k. He believes that to get a diagnosis you don't have to "torture your patients". After the first couple of shocks Carter said to us " I feel like Electro Man!" We laughed and then a little later on the Dr. asked how are you doing? Carter said " Good. I am having a shocking experience today!" Dr. Flores said "Your stealing all my good lines." Carter laughed and said " This is such an electrifying day!" So despite being electrocuted and having needles put in him, he still found his sense of humor and made lemon aide out of lemons. This is why he INSPIRES ME!
Until Next time...........Believe........
Week Off
Week Off!
I decided to let Carter take a break from the Doctors this week. I can tell all the Dr. appointments and being poked at is getting to him. We did have a stress EKG set up for Fri but I am going to move it until next week. Right now we are waiting for the results to come back from last Friday's EMG test. The Dr. did say he believes he has Axonal CMT and it is rare. It just figures everything with Carter has always been rare or different, he can never be the "norm". Ever since he was in the womb! So as for now nothing new to update as far as Dr. appointments or results. He has now posted on his facebook about the disease and is getting a ton of support from his friends. I will say he has done an outstanding job in choosing his friends. They all want to help and are praying for him. They all want us to get T-Shirts made up for them to wear in support. So this is on my to do list. I have already talked to a couple of people about it. We did get the bands made and hopefully those will be here in a week or two. He and his friends are all excited about it. If you would like one please feel free to leave him a message on the guest book about it. I am not sure if everyone knows about the guest book or not. It is a place that you can leave messages for Carter. Inspiring Quotes, suggestions, words of encouragement, hellos and so forth. I am sure you all get it. Well off to go clean! He is off to play xbox! Again! LOL.
Until Next Time......
Michelle and Carter
Until Next Time......
Michelle and Carter
Friday, July 15, 2011 8:45 PM, CDT
Inspire
The last 2 days have had there ups and there downs. I can tell you one thing I have learned through this is that, Carter is someone that I inspire to be like. I wish I had just a smidgen of the positivity he has. Through all of this he has stayed positive and has a great sense of humor about the whole thing. There was a quote on one of my blogs that I just fell in love with the other day and wanted to put it on here. I love it and believe it whole heartily.
"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you are supposed to be." --Joan Ryan
OK. enough of the sappy stuff....Bottom line right now is Dr. Naylor said we are in a waiting game as far as Lymphoma or anything to do with the lymph nodes. The reason being is his latest blood test from Tuesday came back pretty normal. The immature white cells matured an went away. All other lab work as well came back pretty good and he gained some weight! He is at 117! The nurses and I were laughing because who would have ever thought you'd be so happy to see someone gain weight? Dr. Naylor and the oncologist looked at his Chest CT Scan and found one lymph node on his left side in his chest wall that is "inflamed" but not to much to be concerned with. Especially since they cannot feel the other node any longer. They do want to keep an eye on his nodes, cough, fatigue and weight. Because the steroids the ER gave him could have put him into "remission" if he has lymphoma. So basically, we will go back in 5 weeks and redo full cbc and some other markers to see if anything spikes again. If he starts to loose weight again rapidly, more nose bleeds, fever, cough gets worse, call in immediately. As she told Carter "When you come back in I don't want to see any large nodes, no fever, no cough and you better get fatter!" LOL.
Today July 15th we went in for the EMG test (nerve testing). I will say so far this has been the most difficult thing for me as a parent. Watching you child get shocked and needles put into him is not fun. There was a point when he had a needle in his right knee and shocked Carter 3 times in a row that I could see his leg move and Carter looked up at me and said "That one hurt". I would not wish this on anyone ever! He was such a trooper and the Dr. told him he is going to win patient of the year award! He couldn't believe how well he did. I will say the Dr. was very kind and told us about everything before he did it. He warned Carter as to when the shock would happen and made sure he was o.k. He believes that to get a diagnosis you don't have to "torture your patients". After the first couple of shocks Carter said to us " I feel like Electro Man!" We laughed and then a little later on the Dr. asked how are you doing? Carter said " Good. I am having a shocking experience today!" Dr. Flores said "Your stealing all my good lines." Carter laughed and said " This is such an electrifying day!" So despite being electrocuted and having needles put in him, he still found his sense of humor and made lemon aide out of lemons. This is why he INSPIRES ME!
Until Next time...........Believe........
"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you are supposed to be." --Joan Ryan
OK. enough of the sappy stuff....Bottom line right now is Dr. Naylor said we are in a waiting game as far as Lymphoma or anything to do with the lymph nodes. The reason being is his latest blood test from Tuesday came back pretty normal. The immature white cells matured an went away. All other lab work as well came back pretty good and he gained some weight! He is at 117! The nurses and I were laughing because who would have ever thought you'd be so happy to see someone gain weight? Dr. Naylor and the oncologist looked at his Chest CT Scan and found one lymph node on his left side in his chest wall that is "inflamed" but not to much to be concerned with. Especially since they cannot feel the other node any longer. They do want to keep an eye on his nodes, cough, fatigue and weight. Because the steroids the ER gave him could have put him into "remission" if he has lymphoma. So basically, we will go back in 5 weeks and redo full cbc and some other markers to see if anything spikes again. If he starts to loose weight again rapidly, more nose bleeds, fever, cough gets worse, call in immediately. As she told Carter "When you come back in I don't want to see any large nodes, no fever, no cough and you better get fatter!" LOL.
Today July 15th we went in for the EMG test (nerve testing). I will say so far this has been the most difficult thing for me as a parent. Watching you child get shocked and needles put into him is not fun. There was a point when he had a needle in his right knee and shocked Carter 3 times in a row that I could see his leg move and Carter looked up at me and said "That one hurt". I would not wish this on anyone ever! He was such a trooper and the Dr. told him he is going to win patient of the year award! He couldn't believe how well he did. I will say the Dr. was very kind and told us about everything before he did it. He warned Carter as to when the shock would happen and made sure he was o.k. He believes that to get a diagnosis you don't have to "torture your patients". After the first couple of shocks Carter said to us " I feel like Electro Man!" We laughed and then a little later on the Dr. asked how are you doing? Carter said " Good. I am having a shocking experience today!" Dr. Flores said "Your stealing all my good lines." Carter laughed and said " This is such an electrifying day!" So despite being electrocuted and having needles put in him, he still found his sense of humor and made lemon aide out of lemons. This is why he INSPIRES ME!
Until Next time...........Believe........
Sunday, July 10, 2011
Living With CMT by Nick - Having CMT
Living With CMT by Nick - Having CMT
This is a video of a boy named Nick who lives in New York. He was diagnosed with CMT when he was 13 and he is now 18. He has gone through 9 surgeries! This kid has a big heart just like Carter! Just thought I would post it so you all can see what it might be like for him over the next year. Love to all!
Michelle
This is a video of a boy named Nick who lives in New York. He was diagnosed with CMT when he was 13 and he is now 18. He has gone through 9 surgeries! This kid has a big heart just like Carter! Just thought I would post it so you all can see what it might be like for him over the next year. Love to all!
Michelle
Thursday, July 7, 2011
And so the journey begins......
Hello Everyone!Before June 27th, 2011 I had never heard of Charcot Marie Tooth Disease. Come to find out I was not the only one. So many people do not know about this horrible disease that affects just as many as MS. I remember the Dr. saying the name, Charcot Marie Tooth Disease and I must have asked him 3-4 times what? Can you say that again? He said "Don't worry I will write it down for you so you can do research. I felt some relief because now there was a name for what my son was going through but there was also a deep sadness for what he was about to go through. How do tell a 15 1/2 year old who is on the Cross Country team for his high school, you may not be able to compete. How do I tell him his dreams of being a Navy Seal since he was six are probably not realistic anymore? How do I tell my vibrant, outgoing, driven, funny teenager that his world is about to be turned upside down? Well I don't, because he is a fighter, he is driven and motivated and so am I. We are going to fight this thing together as a family unit and help spread the word about CMT.
CMT is one of the most common inherited neurological disorders affecting every 1 in 2,500 people. It affects both sensory and motor nerves. The motor nerves cause muscles to contract and control voluntary muscle activity such as speaking, walking, breathing, and swallowing. This is a progressive disease and eventually can lead to weakness and muscle atrophy. THERE IS NO CURE FOR CMT!
Carter's symptoms as of now are high arch, hammer toes, numbness in all toes, weakening muscles in legs and is showing some mild signs in his hands. He is unable to bend his ankle, cannot walk on his heels and walks on his toes. He is not in too much pain right now; just the numbness is bothering him. We are still in the beginning stage of all the testing. There are 40 types of CMT and we will hopefully find out soon what type he has. We are going in next week for an EMG, a test that will help us understand how the muscle is weakening. We will also be going in for a nerve biopsy within the next couple of weeks as well.
We have decided to look into acupuncture and physical therapy for him to help with the muscle weakness. We have learned that swimming and cycling are best for him. He is already an avid cyclist, so this works well. He really wants to do a triathlon but we will see. He said he definitely wants to do a bike race by the end of the summer. One day at a time right now....
I know a lot of you are wondering how he is taking all of this....Well let’s just say this.
Cater said to me as we walked out of the Doctors office that day "Don't worry mom, Jesus is walking next to me, he is my best friend and this is the path I am supposed to be on." "He won't lead me the wrong way." "This is my challenge and I will be o.k." I just squeezed his hand and smiled. Carter's Challenge was born that day.
Love to All,
Michelle, Sean, Carter, Zachary and Ayden xoxo
P.S. PLEASE FORWARD IF YOU WANT! SPREAD THE WORD LETS FIND A CURE!
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