These last few weeks have been utterly overwhelming. At times it just seems as though the upward battle is getting steeper and steeper and we will never reach the top. Finding strength to get through the day is difficult at times, sometimes I just want to curl up in bed and cry but I can't. I can honestly say the only things getting me through each day is my faith, my family and a incrediable support group of friends. Thank God for my CMT friends, whom I met through Facebook, of all things. They truly get it, because of course they have been through it or are going through it.
As I said these last few weeks have been difficult to say the least. Both boys are struggling not only with school but with their physical limitations. Zach all of a sudden is showing more signs. Halloween he went out trick or treating with his friends and of course came home in horrible pain. He just did not want to tell his friends he couldn't go any further, so he indured the pain. When he got home he was in tears because his feet and legs were killing him. He was just exhausted. Then the next day they had a Diabetes Walk at school and instead of not participating....he walked! Ugh!!!! He said he just didn't want to be different. Which I understand but he came home and could barely walk through the front door. Again, horrible pain in legs and feet. So we soaked in Epson Salt and warm water and relaxed in the recliner. Oh how I wish I could make the pain go away. I am so glad I have my ARD meeting coming up with his school. I really need some help with making sure he does not feel different yet he isn't causing himself any discomfort.
As for Carter, rough week to say the least. He received his night braces on Tuesday and lets just say it hasn't been fun. First night was really rough, no sleep. For those of you who are not familiar with them let me just say this. Once you have them on, there is no getting up. They are not the most comfortable either....to say the least. First night was really rough, no sleep. He was in pain, so I loosened them up but he also had a hard time getting comfortable, he sleeps on his side. So, we came up with a game plan, if he needs to get up or if he is in to much pain he is to call me. So we keep his cell phone charging on his nightstand and he calls me on the home phone if he needs me. First night, like I said was rough. He even asked if he could sleep with just one brace. Second night a little better. We adjusted it a couple of times but then at 1 a.m. phone rings, he is in a lot of pain in his achiles heal. So off went the braces. He needs sleep for school for crying out loud! Carter did find some humor in his braces last night. He was watching Forest Gump over the weekend , remember Forest had leg braces too! So he made some jokes last night when I put him to bed. Like "Run Forest, run." Which reminded me that we all need to keep a sense of humor in all this madness.
I told the boys we just all need to keep the faith and stay strong. Strength will come from our faith and from each other. I told Carter remember when you were first diagnosed, you said "I am not going to let this disease control me." "I am going to stay strong and believe." You need to remember that time and find that inner strength again. WE ALL DO!
Until Next Time.....Keep the faith!
"Stay Strong, Believe"~Carter Hayes
Showing posts with label child with cmt. Show all posts
Showing posts with label child with cmt. Show all posts
Thursday, November 3, 2011
Wednesday, September 28, 2011
Another Medication Not To Take~ Alert
Just a quick post to make sure everyone is aware of this ALERT!
As I was going through my emails I came across one that had an ALERT for a Medication. Please click on the following link Levofloxacin Medication Alert and read the article. If you have CMT or if you are a caretaker to a CMTer please read and make a note of medication.
Until Next Time...............
As I was going through my emails I came across one that had an ALERT for a Medication. Please click on the following link Levofloxacin Medication Alert and read the article. If you have CMT or if you are a caretaker to a CMTer please read and make a note of medication.
Until Next Time...............
Thursday, September 15, 2011
Happy 16th Birthday Carter!!!!!
Ten years ago Carter was born during an emergency c-section. Carter was called a miracle baby at the hospital. He was only 3lbs 11.5 oz! I knew he was special from the moment he was born and that he was meant to do great things.
I just didn't know that these great things would be centered around Charcot-Marie-Tooth Disease. That on his sixteenth birthday we would be doing fundraisers to raise awareness about a disease he and his brother suffer from. I didn't know that the great things he was born to do would be about him taking a stand against a disease and help raise funds to find a cure for him and his little brother, Zachary. What I did know is how strong he is and how he won't back down from anything.
Carter fought his way into this world and he is still fighting. Defying all odds when he was in the womb and defying all odds throughout his 16 years. Carter is my hero and Carter is my guardian angel. I am truly blessed to have such a wonderful child and to have the opportunity to watch him grow from a little boy into a handsome, smart, thoughtful, strong young man.
Carter, I love you and I am so proud to be your mom. The way you have stepped up to be such an inspiration to not only your younger brothers, but to others who have CMT is just simply amazing. You make me want to be the best mom I can be for you and your brothers and sister.
HAPPY 16TH BIRTHDAY BUDDY! WE LOVE YOU SO MUCH AND WE ARE ALL SO PROUD OF YOU!
Until Next Time...................WHO INSPIRES YOU?
"Stay Strong, Believe"~Carter Hayes
I just didn't know that these great things would be centered around Charcot-Marie-Tooth Disease. That on his sixteenth birthday we would be doing fundraisers to raise awareness about a disease he and his brother suffer from. I didn't know that the great things he was born to do would be about him taking a stand against a disease and help raise funds to find a cure for him and his little brother, Zachary. What I did know is how strong he is and how he won't back down from anything.
Carter fought his way into this world and he is still fighting. Defying all odds when he was in the womb and defying all odds throughout his 16 years. Carter is my hero and Carter is my guardian angel. I am truly blessed to have such a wonderful child and to have the opportunity to watch him grow from a little boy into a handsome, smart, thoughtful, strong young man.
Carter, I love you and I am so proud to be your mom. The way you have stepped up to be such an inspiration to not only your younger brothers, but to others who have CMT is just simply amazing. You make me want to be the best mom I can be for you and your brothers and sister.
HAPPY 16TH BIRTHDAY BUDDY! WE LOVE YOU SO MUCH AND WE ARE ALL SO PROUD OF YOU!
Until Next Time...................WHO INSPIRES YOU?
"Stay Strong, Believe"~Carter Hayes
Monday, September 12, 2011
Looking back 10 years to 9/11 and Where We Are Now-Carter-Turns 16 and Cotton Patch Challenge!
Tonight I was on Facebook and one of my friends Sara posted something that just really rang true(see below.) I guess this week is not just a big week for Carter it is for me as well. My first born son, my guardian angel is turning the big 16. Sixteen is one of those big bdays because it symbolizes more independence, responsibility and maturity. Sixteen is when they get their drivers license which is a huge responsibility and leads to discovering new freedom. They become more aware of their future and start to seriously think about College and their future. All of these things leave me as a mom longing for the days when he was 6.
10 years ago on September 11 2001 we lived in Seattle, Washington. Carter was turning 6 on the 15th and Zach was just 8 months old. I remember waking up, getting everyone ready to take Carter to school,we dropped him off and went to go get my coffee at my fav coffee drive thru. When I pulled up the lady said "Oh my god can you believe what is happening? I looked at her a little puzzled, I had no idea what she was talking about and would have never guessed at what she was about to tell me. It all seemed like something out of a movie, could this really be happening here? In America? I quickly turned on my car radio and tried to call my husband but couldn't get through, so I tried the school and couldn't get through. At that point I just started driving back over to the school to go pick up Carter. Since no one seemed to know if and when there might be another attack. When I arrived at Carter's school there were a ton of people there doing the same thing. Pulling their kids out in order to assure their safety.
I remember Carter asking me questions and having to explain what was happening but not leading on that I too was afraid. I told him when we get home, go downstairs and play in the playroom while mommy watches the news and makes some calls. I told him don't worry, its going to be o.k.
I remember watching the towers go down and my heart sinking.The Pentagon and shaking my head and I remember hearing about United 93 and thinking what amazing heroes! I also remember that night we were all in fear, fear of the unknown. Would they strike again? If so where? As Sean and I lay in our bed that night we could hear fighter jets flying over. Something you don't hear to often. At times they were so low it sounded like a big boom. It was a night of little sleep.
Carter woke up the next day and of course was concerned about his bday party we had scheduled. So I got back on the phone and started asking the moms what should I do? We all decided the kids really needed the bday party still. They were only 5 and 6 and really didn't need to understand the full complexity of what had just happened. Plus it gave us adults time to comfort each other. So the party went on as planned.
Fast forward 10 years and here we are 9/11/2011 planning his 16th bday and his first road race with CMT at the Cotton Patch Challenge. Please pray for him to do well and have a great time. Amazing how time flies and how life has changed. We are now in Texas and Zach and Carter have Charcot-Marie-Tooth Disease, something I never even imagined would happen. Yet, here we are getting ready to celebrate his 16th bday in a couple of days and watch him take on CMT head to head. Am I worried yes, but Sean thinks I am a worry wart. I think I just love my kids an awful lot. On September 15th he will be 16 which for me means, he will be gone in two years to college, he will not need me as much as he used to, he will ignore me more often, choose his friends over me and maybe even a girlfriend over me! I hope he will always remember just how much I love him. How when he doesn't come home on time- mom doesn't sleep.
I know I will make it these next couple of years but it is going to be a rough rode emotionally. I know its time to let go a little but I am just not there! This whole post came from a post from a friend and it just happened to hit me on 9/11 and on his Sixteenth Bday week.
10 years ago on September 11 2001 we lived in Seattle, Washington. Carter was turning 6 on the 15th and Zach was just 8 months old. I remember waking up, getting everyone ready to take Carter to school,we dropped him off and went to go get my coffee at my fav coffee drive thru. When I pulled up the lady said "Oh my god can you believe what is happening? I looked at her a little puzzled, I had no idea what she was talking about and would have never guessed at what she was about to tell me. It all seemed like something out of a movie, could this really be happening here? In America? I quickly turned on my car radio and tried to call my husband but couldn't get through, so I tried the school and couldn't get through. At that point I just started driving back over to the school to go pick up Carter. Since no one seemed to know if and when there might be another attack. When I arrived at Carter's school there were a ton of people there doing the same thing. Pulling their kids out in order to assure their safety.
I remember Carter asking me questions and having to explain what was happening but not leading on that I too was afraid. I told him when we get home, go downstairs and play in the playroom while mommy watches the news and makes some calls. I told him don't worry, its going to be o.k.
I remember watching the towers go down and my heart sinking.The Pentagon and shaking my head and I remember hearing about United 93 and thinking what amazing heroes! I also remember that night we were all in fear, fear of the unknown. Would they strike again? If so where? As Sean and I lay in our bed that night we could hear fighter jets flying over. Something you don't hear to often. At times they were so low it sounded like a big boom. It was a night of little sleep.
Carter woke up the next day and of course was concerned about his bday party we had scheduled. So I got back on the phone and started asking the moms what should I do? We all decided the kids really needed the bday party still. They were only 5 and 6 and really didn't need to understand the full complexity of what had just happened. Plus it gave us adults time to comfort each other. So the party went on as planned.
Fast forward 10 years and here we are 9/11/2011 planning his 16th bday and his first road race with CMT at the Cotton Patch Challenge. Please pray for him to do well and have a great time. Amazing how time flies and how life has changed. We are now in Texas and Zach and Carter have Charcot-Marie-Tooth Disease, something I never even imagined would happen. Yet, here we are getting ready to celebrate his 16th bday in a couple of days and watch him take on CMT head to head. Am I worried yes, but Sean thinks I am a worry wart. I think I just love my kids an awful lot. On September 15th he will be 16 which for me means, he will be gone in two years to college, he will not need me as much as he used to, he will ignore me more often, choose his friends over me and maybe even a girlfriend over me! I hope he will always remember just how much I love him. How when he doesn't come home on time- mom doesn't sleep.
I know I will make it these next couple of years but it is going to be a rough rode emotionally. I know its time to let go a little but I am just not there! This whole post came from a post from a friend and it just happened to hit me on 9/11 and on his Sixteenth Bday week.
Tuesday, August 16, 2011
Mission Happy Feet
Please watch this video by Kaitlyn Mattheiss a 15 yr old who made this video to raise awareness for CMT and help find a cure for her brother. Great job Kaitlyn! Her blog is called Mission Happy Feet like ours it raises awareness for Charcot Marie Tooth Disease.
Until Next Time................."Stay Strong, Believe" Carter Hayes
Until Next Time................."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
Detroit Here We Come!
So today on my to-do list was to call Lisa at Dr. Shy's office at Wayne State University in Detroit, Michigan. See Dr. Shy is a Professor of Neurology and Molecular Medicine and Genetics and is known around the world as the best CMT doctor. People travel from all over the world to be evaluated at his one of a kind CMT clinic.
The CMT clinic is set up as a multidisciplinary team, consisting of a neurologist, electrophysiologist, genetic counselor and physiatry specialists. They assess each patient clinically but also collect data for research to help develop new ways to treat CMT and ultimately find a cure.
Wayne State CMT Clinic is the lead clinic in research and is currently one of three sites doing a clinical trial for CMT 1A on High Dose Ascorbic Acid. They have received numerous grants from the National Institutes of Health, Charcot Marie Tooth Association and the MDA just to name a few. This allows them to provide free clinics to families with CMT. YEP FREE! They bill your insurance and then you don't have to pay the rest!
Thanks to Jeanna Sweeney giving me the number to contact I was able to talk with Lisa, who assist Dr. Shy at the CMT clinic today and she said they would love to see they boys! I almost started bawling on the phone with her but I didn't want to miss any information she was giving me. So on DECEMBER 15TH 2011 WE WILL BE GOING TO DETROIT MICHIGAN! COME H*** OR HIGH WATER! This was what she had open and I said absolutely without even thinking twice about it.
I am soooo excited and soooo thankful that Carter and Zach will have the opportunity to be seen by the best of the best Doctors on CMT. God is truly blessing us right now.
So now I have to find out how me and the boys are going to get there but I know it will happen somehow, someway.
Until Next Time.................DETROIT HERE WE COME!
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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