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........
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