Today was a crazy day. We had a lot of appointments and mom didn't do such a great job with scheduling. I guess I will have to work on that a bit. Carter went in for his Orthotics this morning. I thought it was in Grapevine but when we showed up she looked at me like who the heck are you? Come to find out our appointment was in Hurst! Ugh! We now have future appointments scheduled for Grapevine after that fiasco. Plus, I am hoping we don't have to see her again because she told me that I should have done something sooner with Carter. I should have realized that he had something wrong and did something about it. I just had to keep saying to myself STAY POSITIVE MICHELLE! Aside from that it was a great appointment because she gave a lot of good tips and information on what to expect. She said with Carter we will need to make sure we get 1/2 size bigger for the orthotics to fit in, so I guess we will go shoe shopping....She also said to get loose fitting socks as well. She said that they will slowly adjust him since he has been walking on his toes for so long they don't want to stretch him out to fast or it could do more damage. She said it could be like a rubber band effect, you stretch it out and then it just bounces back to where it was before. So he needs to make sure that he wears his orthotics and does his physical therapy. She suggested using a tennis ball to roll his foot on while he is on the computer or watching t.v. I guess this will help with his arch. The good news is she really wants to try and postpone surgery for Carter as far out as possible and she thinks that the orthotics can do it.
Zach had physical therapy today for the first time and that was awesome. The girl that is his therapist used to volunteer at Scottish Rite! She worked with kids that had CMT so she knows what to look for and what to do. She was so patient and kind with Zach. She told him she will push him but not to the point of exhaustion. If he gets tired, CMT causes fatigue, then he needs to tell her. Today was more of the evaluation and next time will be when he gets to do "the fun stuff" she said. She is really going to focus on his balance, strength and stretching. We are supposed to have both of them in physical therapy 2 times a week! Which is just crazy to me since lovely Aetna makes us pay $50.00 every time we go so I would be paying $200.00 a week just for physical therapy! We will see she said we could probably try and get away with one session a week.
Overall, I would say it was definitely an eye opening day as far as how much time this is truly going to consume on my part. I now know I will definitely not be going to work anytime soon. My Aunt Marianne told me the other week that this is my journey and I believe she is right. Especially after the last couple of weeks and talking to some people that have children with CMT. I think I am supposed to help spread awareness about CMT and help others through their battles with this disease. Only time will tell.
Until Next Time.............Tell someone you know about the signs of Charcot Marie Tooth you never know you may be helping someone you care about.
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Jesus replied, “You don’t understand now what I am doing, but someday you will.” John 13:7
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