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
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