Until Next Time.......WEAR YOUR GREEN BRACELETS!
Friday, July 29, 2011
Wooo Hoo! Bracelets are Here!
Until Next Time.......WEAR YOUR GREEN BRACELETS!
Zach's EMG and Ayden's B-day
Today was just an all around busy day. It is Ayden's 3rd bday and Zach's EMG test. Ayden was sooo excited to go to preschool today to share his cupcakes. It was great to see him excited to go see his friends and have a party. His little personality is really starting to come out. He loved all his presents but I think his Buzz Lightyear is his fav right now. Close second is his Cars 2 Scooter from Nana and Pa. He is riding around the house cause it is 106 or something crazy like that outside. Anyway, he loves his gifts and had a great day overall.
Moving on to Mr. Zachy....Zach actually did much better than what I had anticipated. I had visions in my head of having to hold him down and him screaming and crying, he does that when needles are involved. To my surprise he didn't scream, needed no restraint and actually didn't cry until the end and only then for a brief minute. He did ask a lot of questions. He wanted to know everything Dr. Flores was doing and why and what does it show on the screen. Maybe that was a coping mechanism for him, I don't know....I will say that Zach did get more electric shocks than Carter and since his hair is longer I actually saw his hair move! This along with his legs and feet jumping was extremely difficult for me again. Plus he would say "ouch" or "oh". He did laugh a couple of times when Dr. Flores made his glow in the dark jokes. It was funny cause Zach looked up at me and whispered "Am I really gonna glow in the dark?" I chuckled and said "No honey he is just trying to make you laugh to make you more comfortable." When it did come time for the needles to go in, he did look like he was gonna jump of the table and make a break for it but he didn't. Instead he wanted to see the needle and watch it go in. Crazy! This was by far the worse part for not only him but me. Dr. Flores was not able to do any on Zach's hands because Zach said no more. So what do we know? Zach of course has the same type of CMT as Carter which is CMT2, Axonal. We do not know the subtype yet. Zach is showing more sensory than Carter and a little less muscular than Carter. He did say that Zach will need to get orthopedic insoles for now. He showed me Zach's growth plates on the ultrasound in his legs, wrists and feet. He said Zach has a lot more growing to do. It was pretty cool to see where he was and how much futher he had until the bones fused. He said Zach will be tall which I already figured. Overall, glad it is done and hopefully next week we will have all the results in for him.
Today was a good day. We got one of the hardest parts done and celebrated with a great lunch just Zach, Carter and I. Ayden had a great day at school with his little friends and a great bday dinner, presents and cake at home. I am thankful for Zachy making it through the tests like a true trooper.
Until Next Time............Happy Bday Ayden xo and Zachy I am sooooo proud of you!
Moving on to Mr. Zachy....Zach actually did much better than what I had anticipated. I had visions in my head of having to hold him down and him screaming and crying, he does that when needles are involved. To my surprise he didn't scream, needed no restraint and actually didn't cry until the end and only then for a brief minute. He did ask a lot of questions. He wanted to know everything Dr. Flores was doing and why and what does it show on the screen. Maybe that was a coping mechanism for him, I don't know....I will say that Zach did get more electric shocks than Carter and since his hair is longer I actually saw his hair move! This along with his legs and feet jumping was extremely difficult for me again. Plus he would say "ouch" or "oh". He did laugh a couple of times when Dr. Flores made his glow in the dark jokes. It was funny cause Zach looked up at me and whispered "Am I really gonna glow in the dark?" I chuckled and said "No honey he is just trying to make you laugh to make you more comfortable." When it did come time for the needles to go in, he did look like he was gonna jump of the table and make a break for it but he didn't. Instead he wanted to see the needle and watch it go in. Crazy! This was by far the worse part for not only him but me. Dr. Flores was not able to do any on Zach's hands because Zach said no more. So what do we know? Zach of course has the same type of CMT as Carter which is CMT2, Axonal. We do not know the subtype yet. Zach is showing more sensory than Carter and a little less muscular than Carter. He did say that Zach will need to get orthopedic insoles for now. He showed me Zach's growth plates on the ultrasound in his legs, wrists and feet. He said Zach has a lot more growing to do. It was pretty cool to see where he was and how much futher he had until the bones fused. He said Zach will be tall which I already figured. Overall, glad it is done and hopefully next week we will have all the results in for him.
Today was a good day. We got one of the hardest parts done and celebrated with a great lunch just Zach, Carter and I. Ayden had a great day at school with his little friends and a great bday dinner, presents and cake at home. I am thankful for Zachy making it through the tests like a true trooper.
Until Next Time............Happy Bday Ayden xo and Zachy I am sooooo proud of you!
Cycling and the Tour De France
The last 3 weeks have been completely consumed by the Tour De France in our house. I will say even though I am not an avid cyclist I enjoyed the distraction from time to time. Every year from July 2nd to July 26th or so the race is on our tv's. This year was extra special considering Carter was just diagnosed with CMT. This is a great sport for him not only because he loves to cycle but it is a low impact sport which is perfect for people with CMT. People with CMT still need to stay active so there muscles don't waste away and they need to do a low impact sport so they don't aggravate the disease. Carter has been getting on his indoor trainer and riding for 1 1/2 to 2 hours while he watches the tour. He LOVES it and is doing great. He wears his heart rate monitor so he can keep an eye on that, he doesn't have to be out in our lovely 100 degree weather and he gets mom as a cheerleader (not so sure he likes that). It's great to see him so passionate about something again. Plus it is awesome to see him and his dad take off early in the morning with their bike gear, waters and the great bond between them. I will be posting pics of them cycling soon. They just went on a 20 mile ride on Wednesday and they took Ayden in the bike carrier! Ayden loves it. Anyway, just wanted to post something positive to let you all know that despite the disease, he is not letting it get the best of him. He is still able to do the things he loves.
Until Next Time......KEEP CYCLING!
Until Next Time......KEEP CYCLING!
Thursday, July 28, 2011
Urologist, Neurologist, Oncologist.... How Many Doctors Can We See????
Today, I received a phone call from the boys Pediatricians office telling me to call them ASAP to talk about the boys. So after Apple Camp with Zachy I called them. Come to find out that Carters stool tests came back abnormal. There is something coming up that isn't right basically. So they needed me to bring in another sample today so they can run another test called a PH differential (don't ask me I haven't found out yet). Stephanie, the great nurse, said Dr. Naylor is going to refer Carter to a GI Doctor to figure out what is going on. She also said that Carter still needs to go in and get his stress EKG as soon as possible since his heart rate is still going up. She also informed me that they are referring the boys to Scottish Rite! Yeah! Big relief! Hopefully they will get in. Carter is being referred first since all of his CMT testing is done. Zach gets his EMG tomorrow so once results are in they will refer him as well. GREAT NEWS! LOVE, LOVE THEIR DOCTORS! 18 and Under MD rocks! I called and left a message on Monday for Dr. Naylor or Kim about referring us to Scottish Rite and Tuesday Kim called and said I will get the referral in! Easy peasy!
Then I get a call from Ortho saying they are making an appointment for Zach at 3 pm today to see the Urologist. All I could think about was how crazy this is getting. We have an Hematologist/Oncologist, Neurologist, Urologist, Cardiologist, Physiatrist, Pediatrician, Orthopedic and a GI Dr! Seriously? I am sure I even forgot one or two. Anyway, we ended up not getting in to the Urologist today and I am glad we just had too much going on anyway.
On a great note I spoke to Jeanna Sweeney who is with the CMTA. She was so helpful in helping me understand what to do next with the boys and where the best place to go is. She highly recommends going to see Dr. Shy in Detroit, Michigan. He is the best Neurologist in the world for CMT. Dr. Shy is the Director of the Charcot Marie Tooth Clinic and Co-Director of the Neuromuscular Program at Wayne State University in Detroit. She said he is great with kids and his clinic is a FREE clinic! He has a team of Physical Therapist, genetic counseling, basically a full staff! She gave me the number to call and said there is a waiting list but I should try and get the kids in. She flies her 6 yr old in from PA to see him and she sees him as well.
One last note...Please pray for Zachary to have the strength to get through his testing tomorrow. He is very nervous and scared. I'll let you all know how it goes.
Until Next Time........Wish us luck!
Then I get a call from Ortho saying they are making an appointment for Zach at 3 pm today to see the Urologist. All I could think about was how crazy this is getting. We have an Hematologist/Oncologist, Neurologist, Urologist, Cardiologist, Physiatrist, Pediatrician, Orthopedic and a GI Dr! Seriously? I am sure I even forgot one or two. Anyway, we ended up not getting in to the Urologist today and I am glad we just had too much going on anyway.
On a great note I spoke to Jeanna Sweeney who is with the CMTA. She was so helpful in helping me understand what to do next with the boys and where the best place to go is. She highly recommends going to see Dr. Shy in Detroit, Michigan. He is the best Neurologist in the world for CMT. Dr. Shy is the Director of the Charcot Marie Tooth Clinic and Co-Director of the Neuromuscular Program at Wayne State University in Detroit. She said he is great with kids and his clinic is a FREE clinic! He has a team of Physical Therapist, genetic counseling, basically a full staff! She gave me the number to call and said there is a waiting list but I should try and get the kids in. She flies her 6 yr old in from PA to see him and she sees him as well.
One last note...Please pray for Zachary to have the strength to get through his testing tomorrow. He is very nervous and scared. I'll let you all know how it goes.
Until Next Time........Wish us luck!
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........
Inspire July 15th
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 aspire 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........
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