Our story of how an inherited disease called Charcot-Marie-Tooth has affected our lives and how we live with it.
Monday, March 31
Today was a bad day for Masan! Our morning started by doing PT with his rice and beans tub to stimulate his nerves, but that just didn't ease the pain in his hands. He has been on vitamins with iron for a few weeks thinking that they may help, but unfortunately that isn't helping either. This child that used to be so happy and bubbly just doesn't have the energy to do the things that he once enjoyed. He loves playing video games but when his hands are hurting this bad he can't even enjoy that. I just wish I could take his pain from him, I would in a heart beat. If he is feeling better tomorrow we are going to go shopping for special school supplies cause he will be attending public school again come Thursday, hopefully this time it will be different than before. Wish us luck, talk to you again soon.
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