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
Showing posts with label Carters Challenge. Show all posts
Showing posts with label Carters Challenge. Show all posts
Wednesday, June 26, 2013
Tuesday, May 28, 2013
I can't believe JUNIOR YEAR is almost over!
It is starting to hit me like a freight train, Carter will be leaving to go to college this time next year! To be honest it really started when Carter and I drove up to KU, University of Kansas, on May 2nd. Carter is looking at several colleges but he really does have a soft spot for KU now that we visited. It truly is beautiful up there and very hilly(which scares me with his CMT) shh don't tell him.:) BUT they have a great Med program, pharmacy program, full of traditions, cycling club (which we got to meet the president of) and they have a program that would help him if his CMT got real bad! Which really put my mind at ease.
Our KU admissions rep Jon did an outstanding job showing us around and really went the extra mile. He too was a pre-med student and actually knew about CMT!!!!! HUGE BONUS! He told us that they have a shuttle for students that break their leg or have a disability, were it will pick them up from their dorm and take them to their classes. Carter would give him/her his schedule and they would be there waiting for him and take him to his next destination! SUPER COOL! Plus they put in pathways all over campus that would allow him to get up the hill without using the stairs. Jon set it up so we did a campus tour, housing tour and he even drove us around campus and showed us downtown Lawrence. Overall, it was an amazing trip and we both fell in love with KU. I think I cried the whole time we were there! LOL I am such a baby when it comes to my baby.:)
Now we have 8 days left of the Junior year and we will be applying and visiting campuses all summer. Next stop is SFA (Stephen F Austin) which is here in Texas, no not in Austin, it is in Nacogdoches. It is about 4-4.5 hrs away so not too far from home. We will be visiting them the week of June 18th! We will let ya know how it goes! They too have a good pre-med program, cycling club and a really good physics and astronomy program. Carter wants to go to become a doctor, a general surgeon to be exact, so he is choosing physics as his major and astronomy as a possible minor. SFA has the second largest Observatory in Texas and the Central Time Zone! Pretty cool! Carter is really looking forward to the tour and he is very excited because his Nana will be taking him! Yep, my mom really wants to experience seeing her oldest grandson visit a college so she is flying in that week. Crazy cause she was just here on the week of May 7th, she came down before her visit to her oncologist in Louisiana. Anyway, we will see what he thinks of SFA.
Then we will be off to see the University of Arkansas. Which believe it or not is only 5-5.5 hours away. Not bad. They too have a great pre-med program, physics program and he knows people that go there and are looking to go there. So that would be nice. Plus they too have a cycling club and full of traditions too!
I know a lot of people think I am crazy for being so emotional and worrying but they don't have a child with a disease that has no cure and progresses. I know he will be fine cause that is just who he is. He doesn't give up, fights hard for what he wants and doesn't let his CMT get in the way. However, as a mom I worry about him being so far away from home and that his disease will progress. It has been pretty good but lately he is complaining more and more about his left leg. It is really tight and we have noticed that he is loosing muscle in his feet. Muscle atrophy in his feet and lower calf is progressing. Really hoping the stretches the physical therapist gave him and his leg braces will help. He is using the braces again and is able to wear them longer and longer as each day goes by. Praying they will help.
Of course do you think this is stopping him from planning his next triathlon? NO!!!! His swim coach is pushing him hard and he says it feels good in the pool, no pain. :) He wants to do one more tri this summer, we haven't found one yet that works into the schedule but I am sure he will find one.
We will keep you all posted on the college journey. Any advice from fellow CMTers?
Until Next Time..................Cherish the moments you have with you kids because time flies by so very fast and the next thing you know your sending them off to college! :(
Momma Hayes
"Stay Strong, Believe"~Carter Hayes
Our KU admissions rep Jon did an outstanding job showing us around and really went the extra mile. He too was a pre-med student and actually knew about CMT!!!!! HUGE BONUS! He told us that they have a shuttle for students that break their leg or have a disability, were it will pick them up from their dorm and take them to their classes. Carter would give him/her his schedule and they would be there waiting for him and take him to his next destination! SUPER COOL! Plus they put in pathways all over campus that would allow him to get up the hill without using the stairs. Jon set it up so we did a campus tour, housing tour and he even drove us around campus and showed us downtown Lawrence. Overall, it was an amazing trip and we both fell in love with KU. I think I cried the whole time we were there! LOL I am such a baby when it comes to my baby.:)
Now we have 8 days left of the Junior year and we will be applying and visiting campuses all summer. Next stop is SFA (Stephen F Austin) which is here in Texas, no not in Austin, it is in Nacogdoches. It is about 4-4.5 hrs away so not too far from home. We will be visiting them the week of June 18th! We will let ya know how it goes! They too have a good pre-med program, cycling club and a really good physics and astronomy program. Carter wants to go to become a doctor, a general surgeon to be exact, so he is choosing physics as his major and astronomy as a possible minor. SFA has the second largest Observatory in Texas and the Central Time Zone! Pretty cool! Carter is really looking forward to the tour and he is very excited because his Nana will be taking him! Yep, my mom really wants to experience seeing her oldest grandson visit a college so she is flying in that week. Crazy cause she was just here on the week of May 7th, she came down before her visit to her oncologist in Louisiana. Anyway, we will see what he thinks of SFA.
Then we will be off to see the University of Arkansas. Which believe it or not is only 5-5.5 hours away. Not bad. They too have a great pre-med program, physics program and he knows people that go there and are looking to go there. So that would be nice. Plus they too have a cycling club and full of traditions too!
I know a lot of people think I am crazy for being so emotional and worrying but they don't have a child with a disease that has no cure and progresses. I know he will be fine cause that is just who he is. He doesn't give up, fights hard for what he wants and doesn't let his CMT get in the way. However, as a mom I worry about him being so far away from home and that his disease will progress. It has been pretty good but lately he is complaining more and more about his left leg. It is really tight and we have noticed that he is loosing muscle in his feet. Muscle atrophy in his feet and lower calf is progressing. Really hoping the stretches the physical therapist gave him and his leg braces will help. He is using the braces again and is able to wear them longer and longer as each day goes by. Praying they will help.
Of course do you think this is stopping him from planning his next triathlon? NO!!!! His swim coach is pushing him hard and he says it feels good in the pool, no pain. :) He wants to do one more tri this summer, we haven't found one yet that works into the schedule but I am sure he will find one.
We will keep you all posted on the college journey. Any advice from fellow CMTers?
Until Next Time..................Cherish the moments you have with you kids because time flies by so very fast and the next thing you know your sending them off to college! :(
Momma Hayes
"Stay Strong, Believe"~Carter Hayes
Thursday, May 16, 2013
Conquered the Caveman!
I remember my alarm sounding off at 4:00 am and thinking today is the day, the day to prove to myself that I can do anything. Rolled outta bed and I could start to feel the nerves kicking in. I start to get ready and then my mom tells me it is only going to be in the 40's this morning! Really? Really? Just figures. We load up the car, eat a small breakfast and head for the race. My dad and I get there first and its 5:30 and the parking lot is almost packed! The race doesn't start until 7. My mom and brothers soon follow.
It is cold and dark out. Cold enough to see your own breath. I get my bike and head over toward the transition center. There is already a line. While I wait to get in, they come by and do body markings. You get your number marked on your arm and on one calf it is your age and on the other your number. Now not only am I cold, the nerves charge through me. It is real, I am really doing my first tri! After setting my bike and race gear up in transition center I head over to pool area to get my timing chip and then line up for start. The race is sold out! Over 600 participants!
Around 6:45 they tell us to line up by number for the start of the race. I am number 63! Unfortunately, I had to wait outside in nothing but my tri shorts! It was so unbelievably cold, I was shivering and just wanted to get inside the pool. I could feel my muscles start to tighten. Finally, I am up next, I jump in the pool and start to swim. The swimming was a lot harder than I ever imagined. I kept thinking just don't stop, keep going it will be over soon. The water was so choppy in the pool due to so many people in at same time. I remember getting out of the pool and thinking to myself, THANK GOD that is over, now the easy part.
I run to transition station I can hear my family yelling GO CARTER! I hurry to put on my socks, bike shoes and helmet. As soon as I get on the bike I know I got this. The next two parts of the tri are the easy parts for me. I love to cycle and I run Cross Country for my high school, so I got this.
As I come up the last hill I hear my dad and little brother, Ayden yelling "GO CARTER, GO!" Then I come to the last stretch before the transition and I see my mom and brother, Zach. I hear them yell "GO CARTER! YOU ARE DOING AWESOME!" Thank God for my family pushing me. Throughout the race I could hear them yelling GO CARTER! They split up so my dad and little brother would be at one section to cheer me on and my mom and other brother at another to cheer me on, so I basically had support throughout the whole race. THANKS GUYS!
I hurry off the bike and change into my running shoes and start to run. As I start to run I realize I am almost done! After the first mile I am hot, tired and my legs and feet are killing me. All that keeps running through my head is don't give up, push through the pain, do not walk, whatever you do, do not walk! I look up and there is my mom and brother yelling "You only have 1/2 mile left! Keep it up!" Thank God is all I can think at that time. My legs felt like jelly and pains were shooting through my feet and legs. Then I come around the corner and I see the finish line and surge toward it.
I FINISHED MY FIRST TRIATHLON! I DID IT! I did not finish first, not even in top 100 but I finished! I came in 245th place and finished in 1 hour 25 minutes. Plus I was able to wear my Carter's Challenge Race jersey and raise awareness for my disease.
So remember, just because you have a disability does not mean you give up. You can do anything you set your mind to. The sky is the limit!
Until next time...............Don't give up, keep fighting the fight!
Carter
It is cold and dark out. Cold enough to see your own breath. I get my bike and head over toward the transition center. There is already a line. While I wait to get in, they come by and do body markings. You get your number marked on your arm and on one calf it is your age and on the other your number. Now not only am I cold, the nerves charge through me. It is real, I am really doing my first tri! After setting my bike and race gear up in transition center I head over to pool area to get my timing chip and then line up for start. The race is sold out! Over 600 participants!
Around 6:45 they tell us to line up by number for the start of the race. I am number 63! Unfortunately, I had to wait outside in nothing but my tri shorts! It was so unbelievably cold, I was shivering and just wanted to get inside the pool. I could feel my muscles start to tighten. Finally, I am up next, I jump in the pool and start to swim. The swimming was a lot harder than I ever imagined. I kept thinking just don't stop, keep going it will be over soon. The water was so choppy in the pool due to so many people in at same time. I remember getting out of the pool and thinking to myself, THANK GOD that is over, now the easy part.
I run to transition station I can hear my family yelling GO CARTER! I hurry to put on my socks, bike shoes and helmet. As soon as I get on the bike I know I got this. The next two parts of the tri are the easy parts for me. I love to cycle and I run Cross Country for my high school, so I got this.
As I come up the last hill I hear my dad and little brother, Ayden yelling "GO CARTER, GO!" Then I come to the last stretch before the transition and I see my mom and brother, Zach. I hear them yell "GO CARTER! YOU ARE DOING AWESOME!" Thank God for my family pushing me. Throughout the race I could hear them yelling GO CARTER! They split up so my dad and little brother would be at one section to cheer me on and my mom and other brother at another to cheer me on, so I basically had support throughout the whole race. THANKS GUYS!
I hurry off the bike and change into my running shoes and start to run. As I start to run I realize I am almost done! After the first mile I am hot, tired and my legs and feet are killing me. All that keeps running through my head is don't give up, push through the pain, do not walk, whatever you do, do not walk! I look up and there is my mom and brother yelling "You only have 1/2 mile left! Keep it up!" Thank God is all I can think at that time. My legs felt like jelly and pains were shooting through my feet and legs. Then I come around the corner and I see the finish line and surge toward it.
I FINISHED MY FIRST TRIATHLON! I DID IT! I did not finish first, not even in top 100 but I finished! I came in 245th place and finished in 1 hour 25 minutes. Plus I was able to wear my Carter's Challenge Race jersey and raise awareness for my disease.
So remember, just because you have a disability does not mean you give up. You can do anything you set your mind to. The sky is the limit!
Until next time...............Don't give up, keep fighting the fight!
Carter
Tuesday, August 23, 2011
Cold Feet Anyone?
Do you have cold feet? I am asking this because it seems to be a common complaint among people with CMT. I know my son, Carter complains of cold feet often and actually I have very cold feet and hands myself. It could be 100 degrees outside and I want to wear socks! I don't know if I have CMT yet but find it interesting none the less. Over the last couple of weeks I have noticed a lot of people asking about cold feet and hands, so I thought I would put out a poll to see how many people with CMT suffer from this. The poll is in the sidebar on right hand side.
If you suffer from cold feet I would suggest trying Diabetic Socks. They are more expensive but they are seamless, non-binding, usually wider and some have extra padding. These socks would be great for most people with CMT because of their issues with foot sores, sensitivity and cold feet. I am actually looking for some for my son Zachary. Zach is really picking with socks and I never knew why until now. He has CMT type 2 and has more sensory problems than Carter. So any sock with a seam really irritates him and he doesn't like to have them fit to tight. From what I hear Diabetic socks are loose fitting to help with circulation which is another benefit for CMTers.
According to my new friend Carol at www.smartfeetsavannah.com ,copper socks are best for those with CMT because they are seamless, soothing and antimicrobial! Bonus! No more stinky feet! They will help prevent sores, wick away moisture and are very soft! Yes, they are diabetic socks but we have the same problems with feet as they do! I am definitely ordering some of those!
So guys please take the time to complete the poll on the right side. Try these socks, not only will they help your feet get warm but they will keep them protected.
Until Next Time..............Keep those tootsies warm!
"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
Thank You Hincapie Sports!
We want to say thank you so much to Hincapie Sports for helping to get Carter's Challenge bike kits done on such short notice. They have been instrumental in making a child's dream come true. Not only a child's but a fathers as well. Thanks to Hincapie Sports, Carter's Challenge will have a team jersey and shorts with our very own logo! Plus, Carter will be able to wear them in his first race, The Cotton Patch Challenge.
Today we worked with our artist on the logo for Carter's Challenge and the design of the jersey and shorts. It was amazing to see Carter's vision come to fruition. Watching what he sketched on a piece of paper come to life on the screen, as a proof, was a moment I will never forget. When Emily, our artist, sent us the first proof I couldn't believe how she totally captured what we all had envisioned! It was so good in fact that we only had a couple of adjustments. Now we have one of the coolest logo's and I think the best team jersey out there! I cannot wait to unveil it to everyone! Hopefully, Monday we will get a proof that I will be able to upload onto the site. For now, I don't have a clue on how to do it!
I wish I had a way of showing it to you all right now. All I can tell you is I actually started crying when I saw the proofs today. Like I said before this is a dream come true for Carter and Sean. They both love road cycling, follow all the top cyclists, watch every race under he moon and have pictures of road bikes all over our house! So for them to have a team jersey made is beyond words.
Do you have a favorite race team?
O.k. it is late and I am completely exhausted. If I made mistakes or rambled to much I apologize now this is what happens when you are sleep deprived!
Until Next Time.................THANK YOU HINCAPIE SPORTS!
"Stay Strong, Believe"~Carter Hayes
Today we worked with our artist on the logo for Carter's Challenge and the design of the jersey and shorts. It was amazing to see Carter's vision come to fruition. Watching what he sketched on a piece of paper come to life on the screen, as a proof, was a moment I will never forget. When Emily, our artist, sent us the first proof I couldn't believe how she totally captured what we all had envisioned! It was so good in fact that we only had a couple of adjustments. Now we have one of the coolest logo's and I think the best team jersey out there! I cannot wait to unveil it to everyone! Hopefully, Monday we will get a proof that I will be able to upload onto the site. For now, I don't have a clue on how to do it!
I wish I had a way of showing it to you all right now. All I can tell you is I actually started crying when I saw the proofs today. Like I said before this is a dream come true for Carter and Sean. They both love road cycling, follow all the top cyclists, watch every race under he moon and have pictures of road bikes all over our house! So for them to have a team jersey made is beyond words.
Do you have a favorite race team?
O.k. it is late and I am completely exhausted. If I made mistakes or rambled to much I apologize now this is what happens when you are sleep deprived!
Until Next Time.................THANK YOU HINCAPIE SPORTS!
"Stay Strong, Believe"~Carter Hayes
Having Wonderful Doctors Who Support You Make Having CMT Easier
Today Carter went in for his checkup with his regular Pediatrician, Dr. Debra Naylor with 18 and Under MD. The good news is he gained some of his weight back! Yeah! Still not where we are supposed to be but I'll take it. Dr. Naylor did her checkup and said he seems to be doing well. She just wanted to take blood again to check his white blood count, liver and other markers to make sure that everything is back down to normal. Crossing my fingers right now......
When we were in with Dr. Naylor she asked Carter about Carter's Challenge. She heard about it from one of the other doctors in the office, Kim Bookout. Who had learned about from me on Ayden's last checkup. She told us that she would love to support us by letting us put up brochures or flyer's about Charcot Marie Tooth in the waiting rooms. She also suggested that we put our bracelets out there too! Oh and she bought one from us! I actually didn't have any on me so she took mine! Then before we left she grabbed Paul, the doctor who caught the CMT, and he bought Carter's bracelet! They took the bracelets right off of us! What awesome support!
Having a disease and having children with a disease is difficult, time consuming and hard work. The one thing I can tell all of you, is having great pediatricians makes all the difference. Dr. Debra Naylor, Kim Bookout and Paul Boerger have been so incredibly supportive, helpful and caring during our journey. A doctor can have knowledge on the disease, but a real healer not only has knowledge but compassion. I feel truly blessed to have such wonderful doctors taking care of our children.
I hope that all of you have wonderful doctors like us. To learn more about 18 and Under Md check them out at www.18andundermd.com. You just may see Carter on there one day.....Another way they are thinking of supporting us!
Until Next Time.............Having the right doctor can make a world of difference!
"Stay Strong, Believe"~Carter Hayes
When we were in with Dr. Naylor she asked Carter about Carter's Challenge. She heard about it from one of the other doctors in the office, Kim Bookout. Who had learned about from me on Ayden's last checkup. She told us that she would love to support us by letting us put up brochures or flyer's about Charcot Marie Tooth in the waiting rooms. She also suggested that we put our bracelets out there too! Oh and she bought one from us! I actually didn't have any on me so she took mine! Then before we left she grabbed Paul, the doctor who caught the CMT, and he bought Carter's bracelet! They took the bracelets right off of us! What awesome support!
Having a disease and having children with a disease is difficult, time consuming and hard work. The one thing I can tell all of you, is having great pediatricians makes all the difference. Dr. Debra Naylor, Kim Bookout and Paul Boerger have been so incredibly supportive, helpful and caring during our journey. A doctor can have knowledge on the disease, but a real healer not only has knowledge but compassion. I feel truly blessed to have such wonderful doctors taking care of our children.
I hope that all of you have wonderful doctors like us. To learn more about 18 and Under Md check them out at www.18andundermd.com. You just may see Carter on there one day.....Another way they are thinking of supporting us!
Until Next Time.............Having the right doctor can make a world of difference!
"Stay Strong, Believe"~Carter Hayes
Wednesday, August 17, 2011
CMT Awareness Month and Cotton Patch Challenge
I am making this post short and sweet since I have sooo much to do right now.
Until Next Time.............Ride like the wind!
"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!
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!
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